The Hypothyroid gardener

[Seahorse]

Hypothyroid here also. I was diagnosed over 20 years ago and I have been on thyroxine ever since. I can't re-emphasise enough the above points about sticking at it and finding a doctor who understands you and what help you need, though I also echo the sentiment that doing that is bl**dy hard when you're struggling with tiredness and brain fog Without wishing to depress anyone (!) I don't think it's something you can ever get comprehensively sorted - my dose has gone up and down in response to 'the tests' saying I'm at this level or that level. Sometimes I feel great, others much less so, meaning I've had to go back and forth to the docs to get what's right for me, or (more often tbh) just suffer quietly. I think I need to go back again I'm afraid - CH on full blast, woodburner lit, two hotwater bottles and a blanket... I really shouldn't be cold, sigh!

[Finedon.Dandy]

I too am very cold but the GOOD news is I washed my hair today and DIDNT clog the plug hole up with my hair - could probally have counted them on my fingers! I take this as the first sign my medication levels are better

[julesapple]

That was one of the first symptoms I noticed (the other got blamed on other things) Washing my hair in the shower one day, I gathered it into a pony tail (it's long) to squeeze the water out and thought that, with my eyes shut, I hadn't picked up all of my hair because it felt as though I didn't have enough in my hand. Then I realised I had it all, and started to take notice of what went down the plughole, into the hairbrush and up the vacuum cleaner. I realised that where I stand in the bedroom to brush or dry my hair was always thickly coated in hair. It was a really nasty shock as my hair was always one of my best features.

It still falls out, not quite as much, but I do have shedloads of hair now and I can afford to lose some. I know up to 200 hairs a day is normal loss, but I couldn't afford to lose that before.

Jules

[VirginVegGrower]

Last night I lay in front of a red hot coal fire with my feet on the granite hearth. The rest of my was burning, but my feet, just thawing out.
Hair, although I still have a normal amount, used to be a hell of a lot thicker in a ponytail. I know Im hypo, just need to convince the doctors.

[Two_Sheds]

Anyone else suffering in this intense cold weather?

Always ! I'm always cold, hands especially, but I also sweat when I'm cold, weird huh?

[ladylottie]

Even I have had cold hands and feet just lately (I'm the one that's always hot despite my thyroid being underactive) so I do sympathise with you people in the cold weather.
I'd forgotten about the hair loss - for ages I had noticed lots of hair round the plug hole and in my hairbrush. It took some time to realise that it's yet another thyroid problem. Thankfully I only lose a few hairs now so my dosage must be reasonably settled. (For now that is!). Wouldn't it be great if once we started taking the thyroxine we felt normal again. For me it's the not knowing how I'm going to feel on any particular day that's so annoying. I'm sure my friends get fed up hearing about my "thyroid headaches"
I'm just so grateful that my doctor is so good and understanding, it must be awful for all you peeps who have doctors who don't seem to be bothered/too concerned about spending money on treatment. Keep on at them, we pay them to take care of us and that's what they should be doing. After all, we thyroid sufferers have enough problems without the doctors "helping" us as well

[Helgalush]

The specialist in my area for ME/CFS is an endocrinologist doctor (the specialism varies for our condition around the country), but as far as I know they havent done the different tests for thyroid function on me, just TSH. Should I ask for other thyroid tests to rule out whether I have any thyroid problems? I always assumed that because TSH came back in the normal range that it meant I didnt have any problems with it. I seem to share some of the same symptoms that you are describing in this thread.

But then I assume, rightly or wrongly, that they would have checked that sort of thing out thoroughly??

[VirginVegGrower]

The specialist in my area for ME/CFS is an endocrinologist doctor (the specialism varies for our condition around the country), but as far as I know they havent done the different tests for thyroid function on me, just TSH. Should I ask for other thyroid tests to rule out whether I have any thyroid problems? I always assumed that because TSH came back in the normal range that it meant I didnt have any problems with it. I seem to share some of the same symptoms that you are describing in this thread.

But then I assume, rightly or wrongly, that they would have checked that sort of thing out thoroughly??

Is that Dr Skinner? He's supposed to be one of the best, if so.
Are you diagnosed hypothyroid? Are you on thyroxine? Are you still unwell? Could be you need your individual T4, T3 and TSH looking at. Iron and vits B12, D tests too.
Look at Thyroid UK for more information.

[Glutton4...]

This is a really interesting thread. I've suffered hair-loss for years - put it down to DHT, but the treatments don't seem to make much difference, and now I'm not on the pill, and have had a hysterectomy, I'm still losing it. I had my thyroid tested and was told it's normal, so I put my lack of motivation down to laziness (I am lazy, I know). Thankfully, I get fitter and more motivated when the days lengthen. My heat problem, however, is the opposite - I'm usually too warm (freezing hands and feet) and the summer heat just drains me of energy. I'm completely fine in these freezing temperatures, though. Thermals on under my clothes, and off I go. Weird innit!?

[julesapple]

You can be overly warm with HT too G4. One of the symptoms is the inability to control your body temperature, so it can go either way.

I'm in the house - with thermals on, the central heating going and the coal fire - and I'm still chilly. So, you'd think, on Summer days that I'd be ok but no, perversely, I'm then overly hot to fainting point (and I'm far from delicate!) It is weird!

Go to your doctor and get them to test again and then refer you to an endocrinologist. Push the hair-loss side of things if need be because it can have serious psychological effects.

Jules

[VirginVegGrower]

This is a really interesting thread. I've suffered hair-loss for years - put it down to DHT, but the treatments don't seem to make much difference, and now I'm not on the pill, and have had a hysterectomy, I'm still losing it. I had my thyroid tested and was told it's normal, so I put my lack of motivation down to laziness (I am lazy, I know). Thankfully, I get fitter and more motivated when the days lengthen. My heat problem, however, is the opposite - I'm usually too warm (freezing hands and feet) and the summer heat just drains me of energy. I'm completely fine in these freezing temperatures, though. Thermals on under my clothes, and off I go. Weird innit!?

You can be normal for years; what it means is that you are really borderline. Untreatable until you fall into the NHS range, which is not the same as US or Western Europe. They are treated far earlier than we of the UK. Lots struggle on for years and all of this can cause wider implications for stroke, heart disease, etc. Cheerful aren't I? On days 2 and 3 of your period (sorry lads) take your temperature before you are out of bed. If its under 36, chances are you are having thyroid issues. Mine was 34.6, which is poorly! Very poorly!

[Helgalush]

Is that Dr Skinner? He's supposed to be one of the best, if so.
Are you diagnosed hypothyroid? Are you on thyroxine? Are you still unwell? Could be you need your individual T4, T3 and TSH looking at. Iron and vits B12, D tests too.
Look at Thyroid UK for more information.

No I'm not diagnosed as hyopthyroid (I'm sorry I tagged on to this thread because of the similar symptoms and epxeriences - I am diagnosed with ME/CFS - it just happens that the specialist in my area for ME is an endocrinologist, in other areas its different specialisms). No its not Dr Skinner, I dont know him, the only thyroid test I have had is TSH (to my knowledge) - so I dont think I have had T4 or T3 tested. Perhaps that is something I can ask about at my next appointment. Will look at that website, thanks.
Have had iron, B12 and Vit D tested, iron & B12 fine but Vit D deficient which is probably as I was largely housebound for several months. And as I have problems with temperature regulation I kept out of sunlight when I was able to get out in to the garden. Got Dr's orders to sunbathe now!

[julesapple]

VVG, don't think the lads read this - hope not anyway.

One of the reasons I struggled to get a blood test was my anaemia. The doctors kept saying I was tired, achy etc etc because I was anaemic due to very heavy periods. I'm permanently on iron supplements, eat an iron rich diet and have even had transfusions to help this because I was too young for a hysterectomy and HRT. It was vicious cycle.

Jules

[Finedon.Dandy]

Just a quickie;

Please, please, please can those of you undiagnosed with hypothyroid ask what your TSH levels are? Too many of us are just told they are normal but its important to know where in the normal range they are. Here in the UK normal can vary from 0.5 to 5.5 (I think from memory) but the rest of the world has a lower upper limit so if you are around 4 or 5 you WOULD be classed as hypothyroid outside of the UK. Its also important to remember than it may continue to rise over a period or weeks, months or even years so further retests should be available if symptoms persist. Its also important to be aware the T4 and T3 levels are a much better indicator of a thyroid dysfunction - just UK doctors are often at a loss of where to go on this and your TSH can be normal but they can still be out - HOWEVER to compound the problem of being taken seriously they will not (routinly) test T3 or T4 unless your TSH are abnormal - grrrrrr

When I get a chance (unless someone else can) I will post (it may even be on the beginning of this thread) the list of symptoms - why not print it off, select which ones apply to you and put it under your doctors nose?

Much love, energy AND warmth tou you all,

Not so tired Tammy

xxxx

[julesapple]

My four are a lot older than your four Tammy, so I've got more time. You spend any spare moments with BB!

Thank you to the author of this most helpful site.Thyroid Mistreatment, Hypothyroidism Scandals, and Thyroid Treatment Problems | Stop The Thyroid Madness


Important to Note: This list is based on symptoms as reported by a variety of hypothyroid-diagnosed patients. Some patients have some symptoms; other patients may have others. However, these are also lingering symptoms that patients report having while on Thyroxine T4-only meds (Synthroid, Levoxyl, Levothyroxine, Eltroxin, etc) and with a so-called target TSH.

But there’s MORE! In order for symptoms to qualify to be on this list below, these ALSO had to be symptoms which were improved or totally eradicated when these same patients worked with an informed doctor and got on natural desiccated thyroid like Naturethroid, Acella, Canada’s Erfa, compounded or others, and found their optimal dose (and in the presence of good adrenal function and adequate iron labs):

• Less stamina than others
• Less energy than others
• Long recovery period after any activity
• Inability to hold children for very long
• Arms feeling like dead weights after activity
• Chronic Low Grade Depression
• Suicidal Thoughts
• Often feeling cold
• Cold hands and feet
• High or rising cholesterol
• Heart disease
• Palpitations
• Fibrillations
• Plaque buildup
• Bizarre and Debilitating reaction to exercise
• Hard stools
• Constipation
• No eyebrows or thinning outer eyebrows
• Dry Hair
• Hair Loss
• White hairs growing in
• No hair growth, breaks faster than it grows
• Dry cracking skin
• Nodding off easily
• Requires naps in the afternoon
• Sleep Apnea (which can also be associated with low cortisol)
• Air Hunger (feeling like you can’t get enough air)
• Inability to concentrate or read long periods of time
• Forgetfulness
• Foggy thinking
• Inability to lose weight
• Always gaining weight
• Inability to function in a relationship with anyone
• NO sex drive
• Failure to ovulate and/or constant bleeding (see Rainbow’s story)
• Moody periods
• PMS
• Inability to get pregnant; miscarriages
• Excruciating pain during period
• Nausea
• Swelling/edema/puffiness
• Aching bones/muscles
• Osteoporosis
• Bumps on legs
• Acne on face and in hair
• Breakout on chest and arms
• Hives
• Exhaustion in every dimension–physical, mental, spiritual, emotional
• Inability to work full-time
• Inability to stand on feet for long periods
• Complete lack of motivation
• Slowing to a snail’s pace when walking up slight grade
• Extremely crabby, irritable, intolerant of others
• Handwriting nearly illegible
• Internal itching of ears
• Broken/peeling fingernails
• Dry skin or snake skin
• Major anxiety/worry
• Ringing in ears
• Lactose Intolerance
• Inability to eat in the mornings
• Joint pain
• Carpal tunnel symptoms
• No Appetite
• Fluid retention to the point of Congestive Heart Failure
• Swollen legs that prevented walking
• Blood Pressure problems
• Varicose Veins
• Dizziness from fluid on the inner ear
• Low body temperature
• Raised temperature
• Tightness in throat; sore throat
• Swollen lymph glands
• Allergies (which can also be a result of low cortisol–common with hypothyroid patients)
• Headaches and Migraines
• Sore feet (plantar fascitis); painful soles of feet
• now how do I put this one politely….a cold bum, butt, derriere, fanny, gluteus maximus, haunches, hindquarters, posterior, rear, and/or cheeks. Yup, really exists.
• colitis
• irritable bowel syndrome
• painful bladder
• Extreme hunger, especially at nighttime
• Dysphagia, which is nerve damage and causes the inability to swallow fluid, food or your own saliva and leads to “aspiration pneumonia”.

In other words, if you feel you have many of these symptoms, and have never received a diagnosis of hypothyroidism, it’s time to visit a doctor. But informed patients who have walked this path ahead of you strongly encourage you to learn from other patients i.e. to not let a doctor solely diagnose you simply by the TSH (thyroid stimulating hormone) lab, but to do the free T3 and free T4. And just as importantly, to listen to your symptoms, not just an ink spot on a piece of paper.

Or, if you have received a diagnosis and still have many of these symptoms, it’s time to become more informed about better thyroid treatment and all things related to being hypothyroid. A summary is on the Things We Have Learned page, or even more detail in Chapter 3 in the revised STTM book–all to make you more informed with your doctor. YOU are your own best advocate. Teach your doctor!


Hope this helps!

Jules