I have remained undiagnosed for nearly a decade. Symptoms precede that, for maybe another ten years. I think I must be an outlier...
A thyroid ultrasound scan was performed last week and indicated a very damaged gland. The radiologist saying he would write to my GP and recommend prescribing levothyroxine. I've not had any medication thus far.
Some points:
*I have never had a goiter.
*Never tested positive for any autoimmune blood test (ANA etc multiple times), TPO negative/low (only tested once two weeks ago - low/negative), inflammatory markers normal. Just everything on blood test panel normal!
*Never had abnormal TSH (as far as I know - not had many thyroid panels done, though). I'm digging into past medical records once I have clearance.
*Only put on a little weight over the years - mainly on my belly.
However.....
*I have had most of the physical symptoms of hypothyroidism. Literally almost every tick box. Quite severely ill and debilitated.
*Recent blood test, Free T4: two blood tests - 10 and 12 depending on lab range. (Was 15 in 2014 when I already had symptoms).This is within UK range. I have argued that I think 10/12 is too low for me.
*Damaged thyroid gland on ultrasound.
(Waiting for radiologist's report to find out more).
What's going on?! TSH obviously no good for measurements in my case. How is my TSH normal and F T4 low? Why/how is my thyroid gland so damaged?
I've literally seen every type of consultant and been backwards and forwards to GP for years. I obviously don't fit their model for hypothyroidism. My health has been declining and been put at risk all that time. And, yes, I got the somatisation hypervigilence disorder diagnosis (it's all in your head) for my efforts.
Funny, an endocrinologist declared I did not have hypothyroidism a week before the scan. He did say it looked like something autoimmune from my symptoms, though! He refused to consider prescribing levothyroxine.
Anyone else experience anything similar? Especially, TSH always normal, freeT4 low within range, no autoimmune antibodies but damaged thyroid gland.
Many thanks!
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When you quote blood result numbers you also need to include the range for that lab. This is important as lab ranges vary so that a number on its own means nothing.
I'm sure its very frustrating for you but I'm not sure that all hypo people are 'typical'. For instance some people cannot keep weight on when hypo. There are always exceptions to any rule.
Have you done anything that was recommended yet like getting your other antibodies (Tg - thyroglobulin) checked and also vitamin levels?
Low or deficient vitamin levels can lower TSH. I'd recommend you get them checked - ferritin, folate, B12 & D3. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
When you have a thyroid test is it always at or before 9am? This is when TSH is at its highest. See diagram.
Thanks Jaydee. The scan was a watershed. I'm now going to follow up on your suggestions. Just waiting for scan results letter. I want to be prepared with some questions and information when I go to see my GP. Very confused by how different I seem to be and how complex thyroid issues are. Will update when I've seen my GP. Thank you once again 🙏
I obviously don't fit their model for hypothyroidism.
The problem is that they have a model for hypothyroidism! Thyroid hormone is needed by every single cell in your body, so if there's not enough to go round, you can get symptoms anywhere and everywhere. There are text-book cases, of course, but if doctors expect every single hypo to fit into those cases, there are going to be an awful lot of undiagnosed hypos!
Doctors have this idea that hypos have: low blood pressure, weight-gain, depression and hair-loss. And that's about it. They don't know about the other 300 symptoms, like high cholesterol, and anxiety, etc. They don't understand that some hypos have high blood pressure, and some lose weight, not gain it, and others don't have either of those symptoms. In fact, most doctors are totaly ignorant about symptoms.
*I have never had a goiter.
Neither have I. But, I'm still autoimmune and hypo. I have Ord's.
*Never tested positive for any autoimmune blood test (ANA etc multiple times), TPO negative/low (only tested once two weeks ago - low/negative), inflammatory markers normal. Just everything on blood test panel normal!
There is a certain percentage of Hahsi's/Ord's people that never have over-range antibodies. And, there are many more that have low TPOab but high TgAB. So, you also need your TgAB tested. And, I always have low ANA even when my TgAB are high, so I don't think that's a very good guide.
*Never had abnormal TSH (as far as I know - not had many thyroid panels done, though). I'm digging into past medical records once I have clearance.
TSH is not a thyroid hormone, it's a pituitary hormone, a message to the thyroid to make more thyroid hormone. Doctors always assume that everyone has a perfectly functioning pituitary, which isn't true. If thyroids can go wonky, why would we assume that pituitaries never do?
In any case, TSH is affected by the time of day. Do you always have your blood draws early morning, when it's at its highest?
*I have had most of the physical symptoms of hypothyroidism. Literally almost every tick box. Quite severely ill and debilitated.
Well, I always wonder when people say that because there are over 300 known hypo symptoms. I doubt anyone would have all of them. However, we all have our own personal list of symptoms, peculiar to us. It can be a long list, or quite short. But, either way, something should be done about it, but doctors... as I said above.
*Recent blood test, Free T4: two blood tests - 10 and 12 depending on lab range. (Was 15 in 2014 when I already had symptoms).This is within UK range. I have argued that I think 10/12 is too low for me.
There's no such thing as a 'UK range'. Ranges vary from lab to lab, according to their machines that do the analysing. So, when giving results, you always have to give the range that came with them, or the results are meaningless.
What's going on?! TSH obviously no good for measurements in my case. How is my TSH normal and F T4 low? Why/how is my thyroid gland so damaged?
I think you'd probably need further testing to find out what's going on, like other pituitary hormones, nutrients, cortisol, TgAB, FT3, cholesterol, just to name a few. But, doctors are so mean with thier testing these days you'd think they paid for them out of their own pockets. However, they will do a shopping list of useless tests but refuse to test the essential ones. Go figure.
As I said, could be due to a wonky pituitary, or the time of day, or drinking coffee before the blood draw, or low nutrients... TSH is not the brilliant indicator of thyroid status that doctors believe it to be.
Have you had any sort of accident that could have damaged your thyroid, like whiplassh? Or, it could be Hashi's/Ord's... Could be a combination of things. Or could be that you will never know. But, due to lack of goitre, my money's on Ord's.
Thank you 😊 All really useful information. Will follow up on advice and update. There's so much reliance on bood tests only. Your symptoms don't seem to count!
You might find this link of interest, on the subject of Atrophic Thyroiditis. (I'm not making any promises that it is relevant to you, but it might be.) It rarely gets mentioned in the literature, and isn't mentioned that often on the forum.
You're not alone. There are others on the forum with not dissimilar experiences. I've had a bottom of the range FT4 for many years but struggled to get any treatment despite being symptomatic for a very long time.
It was only after a lump was found on my thyroid and after a partial thyroidectomy that I was prescribed thyroid hormones but I still don't have an actual diagnosis of hypothyroidism. I'm still being told that "a low FT4 level is my normal".
You have come to the right place for support. The experience and knowledge of those on the forum will help you to move forward. As others have said on your initial post the first step is to get blood test results and their ranges and post them on the forum for others to comment.
Hi Hedgeree. Thank you for your reply. I will add my blood test results to my biog. I already feel very welcome here and have learnt a lot in such a short time!
Low vitamin levels extremely common when hypothyroid
Low vitamin levels tend to lower TSH, making it harder to get diagnosed
ESSENTIAL to regularly retest and maintain OPTIMAL vitamin D, folate, ferritin and B12
What vitamin supplements do you currently take
When were vitamin levels last tested
Many autoimmune thyroid patients also have some degree of central hypothyroidism where pituitary doesn’t react correctly……but is is considered extremely rare…..more likely rarely diagnosed…..these days with over reliance on TSH as “God” over symptoms and never actually examining the patient
…..patients are far to frequently dismissed as delusional …..when they are in fact hypothyroid
Hello, your story reminds me a little of mine, I had Hashimoto's but my gland was already so full of nodules that got it removed. A year before I was feeling very bad, especially with my nervous system, and it wasn't until I changed laboratories that I realized I had iatrogenic thyrotoxicosis.
Has your doctor ever told you to have a blood tested for ACTH and cortisol in the morning and evening? I still feel bad and just today I received the results of my ACTH hormone and it is elevated, next Thursday I will get my blood results of cortisol, in case they are elevated I may have Cushing's syndrome, which has some symptoms similar to hypothyroidism. (I was reminded of this because of what you mentioned about your increased belly fat.)
If you want take a look at the following link, I hope it helps you
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However, we all have our own personal list of symptoms, peculiar to us. It can be a long list, or quite short. But, either way, something should be done about it, but doctors... as I said above.
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Ok so next piece of the puzzle...I don’t have hashis!.....
Please help with my results: Thyroid Plus Profile and Adrenal Stress Profile
