Hi, I have posted before about my Hypothyroid condition but have some new info.
Last October I had thyroid routine test after 1.5 years (should be done yearly), I had been feeling unwell for many months before and had upped my own dose of levothyroxine from 125 to 150 but still not feeling good. Symptoms of extreme weight gain and hair loss, no energy at all. The results showed my free T4 at 14.3 and TSH 12.70, due to a high TSH, in other words hypothyroid result, despite 150 thyroxine, the GP repeated the tests in January nearly 3 months later, results T4 19.4 and TSH 0.15, so despite same dose of thyroxine, levels were going towards being over medicated. I was told to stay on same meds and repeat a month later. The GP didn't call so I requested a blood test and it was done today.
I have continued to pile on weight and have lost around 3/4 of my hair, I am suicidal now. I have NO energy, do not sleep at all and have no idea how I manage to function. I can hardly walk and feel huge, I have always been a slim person! Something is definitely going on. If I am over medicating I should be losing weight and feel hyper (I over medicated many years ago so I know how it feels) but this is the opposite of how I feel now. I cannot think straight, cannot concentrate or remember things and my brain and memory were always sharp as a pin!
I asked for an anibodies test which came back negative and my GP ordered a thyroid scan which came back abnormal and i have been told my thyroid is atrophied. The GP called to discuss and said this is normal for someone who has been on thyroxine for over 25 years as the glands are no longer stimulated and rely on the medication to function, therefore I must take the meds.
What I don't understand is the extreme swing in the numbers of the last 2 tests, which has never happened before as my meds have always kept my levels fairly stable. All I know is how extremely unwell I feel. I have repeatedly asked for a T3 test but the surgery are unable to request this, I cannot afford to go private. I am hoping that after I get the results from my test today that I can request to see an endocrinologist as the GP clearly has no experience with this condition.
Any thoughts out there? thanks!
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ESSENTIAL to maintain GOOD vitamin levels on levothyroxine for good conversion of Ft4 to Ft3
Request
Full iron panel including ferritin
Especially with hairloss
Also vitamin D, folate, B12 and ferritin
Exactly what vitamin supplements are you taking
Have you had BOTH TPO and TG thyroid antibodies tested
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
Your ultrasound scan confirms autoimmune Ord’s
Do you always get same brand of levothyroxine at each prescription
Always Test thyroid levels early morning ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Thanks for the great reply! I had vitamin etc levels tested last year (not that long ago) and all was good, I take bit D3&K2, vit C, folic acid, fish oils. The blood test was first thing and I’d only had water and last does of thyroxine day before on both tests including one I had today. You’re right o my one kind of antibodies tested. When I questioned about the atrophy I was told it was caused by taking thyroxine and no mention of Ord which I had already researched. Im taking same brand of meds. I’m so desperate I really don’t want to live like this as I simply cannot function anymore and from what I read it’s virtually impossible to resolve!
Also known as Ord’s disease, this autoimmune condition is characterized by atrophy of the thyroid gland and hypothyroidism. It is very similar to Hashimoto’s disease, apart from the shrinking of the thyroid gland instead of the development of a goiter. Ord’s disease and Hashimoto’s disease have historically been classified as separate disorders, but research suggests that they may instead be different manifestations of autoimmune thyroiditis,
Ord's is an autoimmune thyroid disease, just like Hashi's only with Hashi's you have a goitre and with Ord's your thyroid atrophies - nothing to do with taking levo!
Your antibodies were negative but I expect only TPO antibodies were tested, weren't they? Through reading hundreds of blood test results over the years I have noticed that people with Ord's tend to have high Tg antibodies, rather than high TPO antibodies, so they odds are that if you get those tested they will be high.
Autoimmune thyroiditis is the only explanation for your results swinging like that - unless, of course, on that occasion you took your levo just before the blood draw. So, I'm willing to bet that Ord's is what has caused your hypothyroidism.
So if I do have Ords in many ways that only explains why I have hypo and from what I read there is no solution? I’m taking 150 yet feel worse than ever, extreme weight /water gain, no hair growth anywhere on my body and hair on head super thin despite I always had very thick very long hair! I’m freezing all the time, very dry skin and brittle spoon shaped fingernails, inability to tho k straight and beyond tired - I work for myself so cannot turn down work so push myself every single day, but I feel I’m heading for a massive crisis as I’ve been struggling for so long
Well, there's no cure for autoimmune thyroiditis, no. But there is treatment: thyroid hormone replacement. But it has to be optimal. From what you say, I would guess that even though you're on a decent dose of T4 (levo), you are having problems converting that T4 (storage hormone) to T3 (active hormone). But you can only know that if you have the correct testing:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
The NHS rarely does full testing so it would be a good idea if you could do it with a private company so that we have a better idea what's going on.
I’m going to get one of those private tests but see that I’d have to pay for two as there isn’t one that does the full thyroid panel along with vit D/ iron - I don’t need diabetes, anemia or cholesterol as had this done recently
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
If ferritin is low (under 40) then as separate test in few months consider a full iron panel test
Meanwhile work on increasing iron rich foods in your diet
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 3-5 days before testing
Hi SlowDragon and other who have responded on this thread. I wanted to give an update but couldn't see a way of doing it without responding to a comment but here goes.
I had my TSH/T4 done again by NHS 2 weeks ago and just got a reply from the GP as follows:
hank you for your Econsult. Your T4 level is in the normal range at 18.8, however your TSH is even more suppressed than on your last blood tests - it is now 0.05. This is likely to be because the dose of Levothyroxine you are taking is too high. Please reduce your Levothyroxine dose to 125mcg. We should then retest your thyroid blood tests in 4-6 weeks to see if your TSH has improved. I cannot specifically request T3 on the GP blood test system, but I will do a blood form for your next thyroid blood tests in 4-6 weeks and ask if the lab can do a T3 test. Otherwise, it might be something that the Endocrinologists can arrange. I have referred you to the Endocrinologists at the hospital in regard to your Hypothyroidism management, as requested. Please book a nurse appointment for a blood test in 4-6 weeks time.
So, as I suspected they are seeing my TSH surpressed to 0.05 which it has been before in the past. However, when I had it this low before I was losing weight, was very anxious etc, if I am "overactive" which I think is the implication, I should be losing weight and have other symptoms, fast heartbeat, sweating etc, it's the opposite right now, putting on weight no matter how little I eat, hair falling out big time, feeling cold, very sluggish, lower resting heartbeat etc. As you can see from their reply, I've demanded to see an Endo and have T3 tested but as everyone mentions on here, the NHS refuses to do this (crazy). I have just received a kit from Medichecks to do my own T3 along with vits and will compare when results are returned, it will be interesting. I am however, pleased the GP is prepared to do a T3 and has referred me to an Endo and perhaps recognises that I actually know how my body feels having been through over active and under active symptoms during almost 30 years.
Question: should I reduce my medication to 125 as they are saying?
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
I use Medichecks Advanced Thyroid Function, which gives everything needed (vitamins, antibodies, FT3, etc). It is currently running a 20% discount code: medichecks.com/products/adv...
ThyroidUK has a 10% discount code for normal use THYROIDUK10. It also has discount codes with other labs. The full list is on its website.
PS: my husband has Ord's and his TPO antibodies is within range, they stopped counting his Thyroglobulin antibodies at 4,000.
I have Hashimoto's with a goitre. Ain't we a sweet couple?
Thanks TorcHouse appreciate your suggestion and I just ordered with Medichecks and got 20% off the full thyroid panel plus vitamins so I should get a better idea of my blood work very soon as doubt my GP will be helpful although I’m going to insist seeing an endocrinologist! Sorry to hear you both suffer from thyroid issues but at least you are well informed and hopefully getting effective treatment, take care💪🏻
Just to say that whilst the stuff below is complicated/incomplete and somewhat hypothetical, I have taken Lugol's iodine on and off several times so to that extent have 'experimental' evidence that it helps (but not in the way you would think). So the main message is to give it a try (has to be high dose) and I honestly think (due to my own experience and reading even if I don't communicate it well) that it would be helpful in improving current symptoms and, more importantly, in providing you with evidence that heavy metals/other toxins could be the overall problem that needs to be/can be addressed.
I have a small atrophied thyroid (thyroid problems all my life which worsened at menopause - hypothyroid then hyperthyroid, then hypothyroid etc), although I had never taken any medication (levothyroxine or other). I have also had mercury dental fillings for over 40 years - the mercury moves into all tissues of the body (but we also get mercury and other heavy metals/poisons from many other sources). To cut a long story short, I tried Lugol's iodine. It seems the iodine (24mg Lugol's daily) helped not by correcting a deficiency (because the levels of supplementation are so high) but by binding to mercury (and possibly other heavy metals etc) and thus preventing mercury coming in contact with cells of body (and so preventing oxidative stress/autoimmune reactions/destruction of tissue). This lead to some stabilisation of thyroid function/energy levels but is by no means a cure (only removal of mercury fillings and chelation of heavy metals would be the ultimate cure, which I can't yet afford to do).
With iodine (and no other medication or dessicated thyroid), I was clinically euthyroid when my thyroid was producing quite low levels of t4 (just under the ref range) and at this level my t3 was as good as it gets (just above mid ref range and I had good energy etc). However when my thyroid produced higher levels of t4 then the t3 reduced and I felt awful. The reason for this, I am guessing, is that when the cells in the body are making more protein (free t3 is involved in this by signalling to cells, so higher t3 will lead to higher protein production), then the protein in cells is more likely to come into contact intracellular mercury etc, causing oxidative stress and thus causing autoimmune attack and the the cells to shut down so that free t3 will be lower and I guess reverse t3 will be higher (although I've never had the latter tested).
As well as Lugol's iodine I now take dessicated thyroid in very small amounts during the day - i.e. 4-6 metavive 1 spread throughout the day which is helpful after cells start producing protein at a higher level which I think leads to an autoimmune attack on the proteins in the cells including proteins attached to thyroid hormone i.e. bound t4 and bound t3 which means those hormones are lost/ can't be used in cells - I am guessing this is the case even when blood T4 levels are high - in fact the local autoimmune attack in cells lowers T3 including at the pituitary then this would explain why TSH increases etc).
I found when I took higher levels of iodine I could cope and was symptomless even without dessicated thyroid however my kidneys couldn't cope with very high Lugol's iodine (however most of Dr David Brownstein's autoimmune thyroid patients cope with and recover with 50-100mg Lugol's iodine - although his thesis of why it works is different i.e. he argues that it is effective due to correcting iodine deficiency caused by substances e.g chloride/chlorine that compete with iodine: I think this could be partly true but is not the whole story). If you do try Lugol's iodine follow the protocol in Dr Brownstein's book (which is free/downloadable online (he suggests using natural salt, not refined salt, and magnesium & selenium supplements and high dose vitamin C, as well as iodine).
Anyway, despite the reticence of most to use Lugol's iodine Dr Brownstein has written that its only in rare circumstances (e.g. if you have a 'hot' thyroid nodule which I doubt you have if your thyroid is atrophied) that you should not use Lugol's. As above, I wouldn't suggest you use iodine as a cure but just to see if it provides some stabilisation (and if it does then that would help as part of assessment/diagnosis - i.e. it would suggest that mercury/heavy metals could be the problem and that its this that needs addressed). But I have seen other anecdotal evidence that when people chelate/detox then they recover and can achieve virtually no antibodies (e.g. see Izabella Wentz online) and even stop using any medication/dessicated thyroid. Just to say you need to follow protocol (see e.g. Andy Cutler) when chelating and all mercury has to be removed from mouth prior to chelating.
Iodine has the potential to worsen hypothyroidism, so supplementing it / suggesting others with hypothyroidism supplement it, especially in high doses, should not be done without first doing plenty of research to make sure the risks involved are properly understood :
this post contains links to some relevant information which anyone considering high doses of Iodine should be made aware of :
My endocrinologist was also concerned about iodine causing or prolonging hypothyroidism because of his training and he mentioned the Wolf-Chaikoff effect. However that effect is temporary, lasting only around a week.
When I was hyperthyroid, I took Lugol's iodine and immediately my symptoms improved/heart rate dropped (I took no medication at all). Within a week or two I was euthyroid and then over the next month (still taking iodine) I did become increasingly hypothyroid but this was attributable to the still high levels of (measured) antibodies destroying the bound hormones. Following that however (still without any medication/dessicated thyroid but still taking iodine), as my antibodies dropped (as measured at 4 time points over 6 months), my free t3 and free t4 increased. By the 6 month point free t3 and free t4 reached normal levels - or at least levels within the reference range (this was still with iodine but without any medication or dessicated thyroid).
I often see it stated in papers that iodine can cause hypothyroidism but evidence (you hinted at this think) is thin on the ground. At present, however, I think that there are sometimes simplistic interpretations of data e.g. it is concluded that, if hypothyroidism follows iodine intake then iodine is the cause of the hypothyroidism. But in my experience iodine intake was not the cause of hypothyroidism (as above). If iodine reverses a situation where the thyroid is producing a lot of hormone to compensate for lost/low hormone at cell level (whether one is biochemically hyperthyroid or not, as tested in blood) then that is a good thing, even if one becomes hypothyroid for a period until the antibodies go down.
When I first started iodine I was careful to just increase drop by drop (6mg each drop) to ensure there were no adverse effects at each stage and Brownstein emphasises that any adverse effects (not hypothyroidism but e.g. headache etc are usually down to the effect of iodine in detoxing other halides, which can be supported through natural salt and other things I mentioned. I think its ok as long as one is cautious and informed, as you say, but it shouldn't be something to be too afraid of because it can be useful.
There are anti-Thyroid- Binding Globulin antibodies (also anti- thyroglobulin antibodies - thyroglobulin is bound to thyroid hormone in thyroid). There is also info in the autoimmunity literature that heavy metal/toxins can alter proteins leading to autoimmune attack. So there are likely antibodies that can attack all proteins altered by mercury or other toxins/metals throughout the body which could influence thyroid function directly and indirectly . This is sometimes picked up by NHS in minor ways (e.g. if the person has adrenal problems or diabetes then they 'may' be tested for antibodies, however the reason for the antibodies is never investigated).
It is almost impossible to gain information about this through NHS testing because they do not test for bound hormones but I am guessing that when I was hyperthyroid the bound (vs free) hormones would have been much lower compared to when I was hypothyroid but taking iodine to bind mercury. The iodine (by binding to mercury) allowed (I think) the hormones, bound and free, to build up again. It does also seem strange that they only test for anti-thyroglobulin antibodies and anti-TPO antibodies because thyroid function (the function of thyroid hormones throughout body and the function of thyroid itself via feedback etc) involves activity (including antibody activity) at the cellular level in the whole body.
Did you mean that if there were antibodies against TBG that the actual hormones attached wouldn't be destroyed but 'go free' causing hyperthyroidism? Could be but I couldn't find anything on it. I have thought about why when I had a high level of free t3/hyperthyroidism, the thyroid was still being stimulated to produce more hormone via high TSH. I came across some literature saying that the cellular feedback mechanism is 'post-transcriptional' i.e. once the cell (signalled by t3) has made the protein (any protein, not only directly thyroid -related protein), then the relevant cell activity (including t3) will cease. So in line with this (I speculate) , if the level of toxicity (mercury or other) in the cell is high and the cells are producing higher levels of protein which mercury attaches to via sulfhydryll bonds then this could elicit an autoimmune attack on that protein, so that the feedback mechanism does not kick in (because the protein has not been made/transcription hasn't occurred), and we become hyperthyroid because the demand for t3 becomes continuous because the protein keeps getting destroyed.
I think that the progression from hypothyroid to hyperthyroid depends on the increased level of toxicity in cells. And I think that the reason thyroid problems for me got worse at menopause (i.e. I became biochemically hyperthyroid having been 'subclinically' hypothyroid), is because menopause increases toxicity (i.e. one loses muscle/produces comparatively less protein, so mercury both increases in concentration and also moves from tissues where it was relatively harmless - like muscle - to organs where it will cause more damage). (Also to note heavy metals build up over the years in the tissues so by menopause it could already have been quite high).
I know I am in part just speculating but the area obviously hasn't been adequately researched. But do we always need to know the precise mechanisms? In the circumstances and given time is of the essence (for us and our lives), perhaps its enough to know that removing mercury etc from body seems to help thyroid to a much greater degree than hormone treatments alone and can mean eventually that we don't even need the hormone treatment. It may be anecdotal evidence but that is sometimes the only data we have. There must be a reason for the level of autoimmune thyroid problems in Western countries vs other countries and I think the level of toxins is it. I have tried to broach this with the NHS however the message seems to be that the medical model just doesn't involve considering chronic poisoning and they are not set up to investigate it even at the most basic level (e.g. they measure only blood levels of methylmercury as one would get from fish vs elemental mercury as one gets from mercury dental fillings and other sources; and ignore the research evidence from autopsy studies showing that mercury is thousands times higher in other tissues/organs than in the blood). I mean, its been known for millennia that mercury is one of the most toxic things on the planet! I don't think patients should be forced to work out the precise internal mechanisms of thyroid dysfunction - without help of NHS labs etc this would be impossible anyway. I know for sure that I have mercury poisoning as I have a plethora of signs and symptoms so this should be enough to get the mercury removed. (And the signs and symptoms can be subtle but that doesn't mean that the health consequences are mild). So I would suggest to any thyroid patient to go online and see if they have signs and symptoms of mercury/heavy metal poisoning, by looking at scientific literature and long list related to the whole body. We are also taking a risk if we think that we 'only' have thyroid problems because mercury poisoning is associated with diseases of old age etc.
Oh I see , you mean there are no antibodies for 'bound hormones', just for globulin/proteins which would then still reduce the amount of bound hormones circulating (and relatively more free hormones). Is that right? And only 'free' t3 enters cells, so if there's more free t3 - due to high levels antibodies to globulins - this causes hyperthyroid symptoms. (with fewer antibodies to globulins, there is relatively -compared to hyperthyroid situation - more bound hormone so cells with toxicity can still protect themselves by eg producing more reverse t3 and closing down to an extent.
This seems to fit my experience with taking high-dose iodine i.e. as the thyroid concentrates iodine then iodine binds with mercury etc so that anti-TPO and anti-thyroglobulin antibodies are at (lower) level thus thyroid hormone - bound and free - can be produced at reasonable levels. But it seems tissues/cells using the free t3 (which don't concentrate iodine) are still quite toxic so when there is more free t3 available and thus cells produce higher levels protein, those proteins are more likely to come in contact with mercury and or are altered by mercury, causing autoimmune reaction and cells to protect themselves - reverse t3 etc. But, in my experience if the levels of t4/t3 are moderate to lowish e.g. t4 = 10 (range 12-22), then this reaction with toxins in cells (I hypothesise!) doesn't seem to occur I am as close as I get to 'euthyroid' (the latter I can say with certainty). Unfortunately it never stays this way - the thyroid ends up producing higher levels of t4 and when reduced to free t3 a reaction is caused & presumably high reverse t3 and I have symptoms - lack energy etc. Like snakes and ladders. However whilst taking iodine I never go back to being hyperthyroid so that's a plus. I am experimenting with a low protein diet and eating sugary stuff when I feel I need to. (i.e. to ensure cells make protein but not too much and not too quickly) - not sure if this is logical however I previously felt better doing this (at a time I had thyroid problems but was not yet aware).
Anyway, I think I can see why some endo's are reticent about prescribing t3 at higher levels as it could be counterproductive?
Atrophic thyroiditis (gland less than 5 ml in volume) is associated with TSH receptor blocking antibodies. These patients need liothyronine(LT3) , the active form, to feel well. I had the same thing happen to me. My endocrinologist kept increasing my levothyroxine until I got severely hypothyroid and felt suicidal. She only measured TSH and FT4. After I kept getting worse, she finally added LT3 at 5 mcg 2x/d and I started improving. After that she measured FT3 and I was still very low. I kept gradually increasing the LT3, and since my brain was functioning better, I was able to get on forums and learn from other patients. For some reason, she refused to go above 20 mcg /d of T3, so I had to seek help elsewhere. Paul Robinson's book "Recovering with T3" is very helpful.
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Thyroid result confusion
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