Since March I have been struggling. First with weight loss - 2st over a few weeks. And hair loss and thinning. My hair is now white and virtually transparent. Insomnia and even panic attacks and anxiety. I'm achey and cold all the time where I have always been hot since the menopause. I'm 62. I talked my GP into a full blood test in June. My cholesterol was up and Vitamin D down. My TSH was 1.76 which my GP said meant she would not do any further thyroid tests. I have asked for another full blood test but my email has been ignored. I'm going to ring tomorrow to try and get one as they have put me on an antidepressant that has quelled my anxiety a bit but everything else is still there. Can a TSH of 1.76 still mean thyroid issues or can I rule it out.
Could it be Thyroid issues?: Since March I have... - Thyroid UK
Could it be Thyroid issues?
Hi, look for replies from slowdragon on full range of thyroid tests, I would also suggest someone should look at your B12 serum too (I would recommend b12d.org to inform yourself on B12). GPs love the absolute numbers, but I think the trend over time is important too - get copies of prior blood tests to compare - you may have had a TSH done at 50 - some practices do a well woman check at that age including TSH.
Good luck and hope you feel better soon.
With a significant weight loss it might be worth asking your GP to check your cortisol levels, this needs to be done between 8-9am - make sure you get copes of your results as GP's often don't understand them.
I can see that your GP will be quite happy with your TSH - I imagine it sits within the lab levels - the numbers in brackets next to the result. Doctors only bother about anything that is outside those limits although by the time you get outside at either end you would most likely feel very ill indeed. Simply testing TSH alone is no use at all.
If you can afford it I’d say to buy your own home finger prick thyroid test from Medicheck - they are doing a good discount at present. You can get one that tests vitamins D and B12, antibodies, iron etc, etc. It also tests all aspects of your thyroid TSH, T4 and T3. Only then will you have the full picture of your thyroid.
I had a similar weight loss but my TSH was below the lowest lab level and my T4 was well above the lab range. Yes ur doctor definitely needs to investigate your unexplained weight loss though.
This is a personal opinion. The only use for the TSH test the first time it is done is to see the relationship between your TSH level and your FT4 and FT3 levels. TSH is produced by your pituitary and you need to determine whether or not your pituitary is working properly. If your FT4 and FT3 levels are mid range or higher (approximation) then your TSH level could be a true reflection, but it might not be.
Your symptoms could have a variety of causes - high anxiety can indicate a tendency to Cushings Disease - over production of cortisol due to a cortisol producing tumour on the pituitary or adrenals. This needs to be ruled out. Conversely, very similar symptoms can be produced by very low cortisol or a tendency towards Addisons Disease.
If your GP isn't interested in testing, consider ordering a saliva cortisol test. Several companies offer these, they are easy to do at home, and you can order through the main ThyroidUK website thyroiduk.org/getting-a-dia... There is lots of helpful info on the site, including info on adrenal issues, so take time to explore it.
Something is going on and anti-depressants are not the answer. I'm not against them - I take them myself sometimes - and they can be really helpful when needed. But they don't address underlying medical issues that need to be determined first.
First thing is, do you have any other actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/signs-symptom...
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
Do you have other thyroid results? FT3, FT4, antibodies TRAb, TPO, TG
The white hair and weight loss sound a lot like Graves symptoms. There might be Hashimoto's as well or just the Graves thyroid burning itself out??
Good point, it could also be atropic autoimmune thyroiditis that has mixed symptoms but no goitre, it is related to graves more than Hashimotos. I have it and my symptoms were very like those described. TSH can vacillate. TSH blocking and stimulating antibodies are involved. Tests for these are quite expensive.
Thank you very much for sharing.
You were diagnosed via blood test?
Antibody tested was TRAb?
My first blood test was indicative of Graves’ disease but I don’t know if antibodies were tested but I was given another almost immediately and my TSH was through the roof and the diagnosis was changed to hypothyroidism. I presume my antibodies must have been tested in the second test if they thought I had Graves but again I don’t know those are the two blood tests I don’t have copies of. They tested antibodies in later blood tests. I didn’t really understand all that only more recently, reading Dr Tania Smith’s blog. I should look the tests out to see what the antibody results were and ask for copies of those two at the surgery, but now is not an ideal time. My final diagnosis was atropic autoimmune thyroiditis the consultant did say it was a less common type of thyroid disorder so must not have thought it was Hashimotos and I can only think that was determined from the antibodies and my presentation. I never had a goitre. I was as thin as a rake and I was always on the go in my 20’s -50’s but began to get episodes of fatigue and felt increasingly cold I had all sorts of weird problems: frozen shoulder, guts problems, piles, excessive cramp, arthritis, shingles, excruciating period pains, dry skin, terrible itching, insomnia, headaches, horrible heart pains and more....I only put on weight in the final throws (last few weeks) when I started eating huge amounts of good because I felt like I was starving to death but my worst weight gain was on Levothyroxine. My last blood test only did TPO and the other hashis antibody not Trab and there were a few but they were well below the range where it’s a problem.
Thank you.
Had a read of your old post. Atropic autoimmune thyroiditis sounds pretty serious.
How is it managed and can it go into remission? Is it possible to get to a point where it stabilises?
I think it is because it often goes undiagnosed and the endgame is total destruction of the thyroid I actually reached that stage but got the meds just in the nick of time. Everything had gone wrong my body clocks were in total disarray I had awful insomnia hideous nightmares and I began to think people were following me abd even swapping into different disguises - completely barm pot stuff. I even saw a skull looking back at me in the mirror abd had a voice saying “you’re dying” I presume the subconscious is aware that something is drastically wrong and tries to goad you into survival action it must know you’re going to croak. It was deeply unpleasant, but morbidly interesting looking back. I wish I had kept a diary (probably completely impossible in that state) it would have been a serious record of the degeneration. It’s just some fleeting memories now. I think it can go into remission if you don’t get the antibody that causes or perhaps more correctly is a marker for thyroid destruction occurring. I’ll find the link to Dr Tania Smiths article about it. She had it as well and our historíes are remarkably similar.
Here it is it makes for very interesting reading:
thyroidpatients.ca/2018/12/...
Thank you, very interesting. At one point I was looking for tests to check stimulating and blocking TSHR antibodies but it was futile. At least not doable at basic GP or specialist levels.
This was really apt - "Atrophic Thyroiditis is a HYPOthyroid form of Graves’ disease".
Can AT antibodies be brought under control? And if yes, how?
I think in one of her posts I thought I was that one, she says that the condition can burn out be it depends on what antibodies are present but I’m not sure if it refers to Graves&/ AT. If I find it I will post. I seem to remember thinking if only that had happened with me when I first read it.
Thank you. That's very interesting. And it makes a lot of sense.
Yours didn't burn out?
What's your current status? Are u much better now? Still on any meds?
No mine went to the bitter end so I have no thyroid function it’s very small indeed and shrivelled to the extent that it’s highly unlikely to have any function according to my endo’s opinion of the ultrasound scan he have me. I am permanently hypothyroid and on hormone replacement therapy for life or I will die. I took Levothyroxine but never felt well on it (my close family with zero thyroid/zero function all felt really well on Levo so I knew something was wrong in my case), in desperation I tried NDT and had immediate and dramatic improvement. I’ve taken it for about 7 years to good result. Interestingly my depression which was very severe has completely evaporated and I had that all my adult life, so in some ways I feel better than since teenage. I discovered I have the DIO2 gene combination for poor conversion of T4 to T3 so perhaps that is the reason why I had such a poor response to T4 monotherapy. I also have genes for thyroid hormone resistance but I’m not sure if it’s significance. My eyes are a new problem ☹️ it’s worrying that the antibodies can persist even after gland destruction but hopefully this eye business is unrelated to my hypothyroidism.
Thank you very much for sharing.
For how long were u ill before u were finally diagnosed with AT?
Can I ask what's the matter with your eyes?
Do u know if u still have AT antibodies? Or do these resolve once the thyroid is no longer functional?
It’s hard to know. I got ankylosing spondylitis in my early 20’s which can be related and started to feel ill in my 30’s with greying and thinning of hair (it was very luxuriant before this) and Achilles tendinitis that needed an operation, then I got episodes of heart pains that went away as mysteriously as they appeared. Things got worse in my 40’s with more and more problems which I now believe were down to thyroid disorder. I had tons of energy and slept very little for the most part so I’m suspicious I must have been overactive at that juncture probably from my 20’s up to my mid 40’s with short episodes of under activity till the two slowly flipped over and the under activity predominated. I was diagnosed when I was 52 but I believe it had being going on for decades possibly since my 20’s but certainly from my 30’s I suppose the hormones were being affected. I’d say the final part was very rapid indeed I sought help in utter desperation I felt terrible by this juncture with sudden mood swings and all sorts of horrible symptoms luckily that GP listened and did those two blood tests I mentioned. He even called me about the second saying I must start medication immediately and not to leave it till after Xmas I got the meds New Year’s Eve or possibly the day before. I think I’d have died if I had left it. I felt like I was going to freeze to death - it seemed impossible to be that cold and still alive and I remember lying in bed fully clad with two duvets and two darling whippets on top of me with central heating on full, yet absolutely frozen and praying to die and for the suffering to be over. I was quite surprised to wake up the next day feeling just a tiny bit warmer. I really thought I was a gonner. I didn’t do well on Levo in the long term but it did save my life.
My last blood test showed very low levels of TPO and the other hashis one I always forget it’s name but well below the levels to cause concern. I might get a blood test for the Graves ones if this eye thing persists. It sounds like the antibodies can reappear even if the thyroid has atrophied. There is swelling all around the eye socket more below and two bits in the middle extending into the cheeks. There is jelly like stuff in the corners of my eyes that the optician said is the cornea being inflamed. I get bouts of excessive watering and tears down my cheeks but mostly they are dry. It hurts to look to the extremities of vision but the vision itself seem completely unaffected. I’m now on antibiotics but the swelling is becoming more extensive.
I had double vision and blurring plus dreadful star burst around lights just before my thyroid problem was diagnosed which I though might be TED. It was never diagnosed as such. I later got ptosis in the eye I had had shingles on, some years before. I had investigations for myasthenia gravis that were inconclusive with some signs but not enough for a diagnosis. If it was that it never developed further thank god. The ptosis has improved since taking NDT they never found MG antibodies but they often don’t, even in those with it.
By golly, u give a great and vivid summary! I can just picture it.
By medication, do u mean levo?
I took Levo for the first two years then self medicated on NDT which I have stayed on since then and felt much better for it. Hope that clarifies it.
Thank you very very much for all that you have sharedIt's been a real eye opener learning about this AT beast, and it's place in the thyroid spectrum.
Knowing of its existence certainly clarifies many symptoms out there. Even if one does not get full blown AT, it still explains a great deal when one's thyroid condition shades into AT.
My best wishes to u, and greatly happy to hear that u are in a much better place now after decades of dealing with this monster.
God bless u well TSH110.
I would have a look a Elaine Moore's site and even ask her about this.
Here is a link to her site.
Thank you so much for all your brilliantly informative replies. My GP just did a full blood count back in June and refused to do anything since. I am going to ring tomorrow to ask for another as I’ve been told the antidepressants she put me on can cause liver issues and its been 6mths so she shouldn’t refuse for that reason. Thanks to this group I’ve ordered the medichecks thyroid test and would be grateful if I could post the results on here. I actually feel worse after 6mths on antidepressants. The anxiety has calmed quite a bit but I ache all day and hardly sleep. I feel like I’ve aged 20yrs.... Thanks for everything.
I rang the GP. I am feeling quite ill at the moment. Aching, 'brainfog', up most of the night restless, Almost like the flu but no cold. I have ordered a private thyroid test. I'll get that done next week. After spending 3 mins on the phone listening to a recording of all the reasons you can't see a doctor I spoke to a receptionist. She said 'you had a full blood count in June and it was fine'. I told her I had deteriorated since then and also had been put on meds. She told me she would refer the situation to the doctor who is only in on Tuesday and they will decide if I need another blood test or not.... I have bought medichecks thyroid test with a clinic visit to collect the blood. Can't afford another test but will keep pushing my doctor for the blood count because I am now on Mirtazapine (antidepressant) and apparently it can cause liver issues because a friend has just been taken off them because of his blood results. Is a full blood count too much to ask for over six months after the last one?!
I think they try and limit them as much as they can - quite what they think a blood test is for other than a useful tool to help solve why a person has unexplained symptoms I just don’t know 🙄 they really ought to know thyroid disorder especially Graves’ disease is dynamic. I had one blood test - TSH undetectable - a couple of weeks later it was 110. I didn’t have Graves - they thought I did with first result - I had Atropic Autoimmune thyroiditis, which was very advanced. Your symptoms are similar to what I had,
Hopefully your medichecks test, which is very comprehensive might shed more light on what is going on. You will get lots of helpful comments if you do a new post with the results when you get them. Knowledge is power 😉quite why you doctor does not want to find out why you feel poorly is beyond me. They bung you in antidepressants as fast as they can as a sinister box ticking exercise so they can label you as mentally unwell and wash their hands doing any real doctoring. So lazy where’s the job satisfaction in that approach. They earn £100k a year and in my opinion, they way some of us have been treated, is simple not good enough and deffo very poor value for money.
This blog is very good but quite technical in places but worth a read she deals with the different types of thyroid disorder this is the one I mentioned:
If its too much to ask for, then no need for a full blood count but at least get the liver test done.
Given I have no idea of your full situation, but putting u on an antidepressant seems unnecessary and just messes around with your body and causes unhelpful distraction, when what u really need is to concentrate on the real problem at hand.
Please do post results when u have them.
Best wishes.
I would think that your doctor should be investigating a 2-stone weight loss in a short period of time, whether it is your thyroid causing it or not. Karen
I agree ... that is a lot of weight to lose in such a short time. I became very thin and lost over a stone which is a lot for me because I used to weigh about 9 stone before I got this horrible disease. I lost weight over several months and no matter how much I ate I could not gain it back. I even had to go out and buy size 8 clothes which I haven't worn since I was a teenager. I looked and felt dreadful.
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