Just got my bloods back and would appreciate any advice what all these could mean and/or how I can myself get well(er) as I am not at all convinced this knowledge will ever come from my clueless but kind GP and NHS Endo.
By way of background, thyroid disease runs in my family, and I have had years of struggling with fatigue and weight gain even when eating tiny amounts long before I hit perimenopause and everything got way worse. I cannot lose weight even when fasting and rapidly gained 6 stone in just 2 years and my stomach is like a football. I have serious edema and swelling too in legs and hands... fat and bloated and am generally exhausted and dizzy all the time and unable to work or have a social life or any real kind of life really. Fed up ain't the word.
I am not currently on any meds at all except for HRT patches. I had to come off levothyroxine due to it making me much worse (as it has done every other time I have tried it in the past) so not on that.
The UK NHS Lab Ref Ranges are in brackets.
TSH - 8.83 mlU/L ........... [0.3-5]
T4 - 15.9 pmol/l .......... [12-22]
FT3 - 4.2 pmol/l ................... [3.1-6.8]
They did not do a thyroid antibodies test but had them couple of years ago and was OK by NHS standards
Curious to know exactly which supplements you are using? It's all too easy to go out and buy the wrong type with not enough of what you need in them or of poor quality.
Some brands of meds suit some better than others. Maybe you tried a brand that contained lactose or the Teva brand which is a bit of a marmite thing. You might just need to wise up with regards to types of levo available. You definitely need Levo though along with the supplements. Sorry this is all such a struggle.
I just bought myself Better You D3000 and K2 spray.
I am going to look for a good B12 and other B supplement but got myself some B12 patches not yet used as only just arrrived from amazon. I had been looking for injections but can't find any around for miles.
I do usually try and go for good brands of vitamins rather than cheap rubbish (eg Solgar etc). I am not aware of usually reacting to lactose or fillers normally as fine with other pills.
I have tried levo on at least 3 occasions in the past over the years and always had a bad reaction to it (making me a lot worse) so stopped. Last time - this year - I had Northstar 50s and was the worst reaction of the lot and I had to stop as it was so bad. Not sure of the other brands of T4 trialled before as no longer have the packets but it would have been NHS prescription/pharmacy.
I have concluded I am either a poor/non T4 converter and/or have Reverse T3 fighting me due to prolonged (literal) starvation to try control my weight - a losing battle - and severe stress from PTSD.
I tried T3 on its own some years back (sourced from black market) and was "normal" on it for first time in decades.
The recommended B12/B here is Thorne Basic B complex. It contains the active forms of B vits which are far superior to non active forms. It would pay you to learn the difference. Sprays are almost as good as injections as don;t go via the stomach. Would need the complex on top though for folate etc
Perhaps you just need T3? Either that or try a lactose and mannitol free brand of Levo. Persuading an Endo to prescribe T3 is another story so good luck! You may not be lactose intolerant, however some do have issues with lactose in levo due to unknown reasons. Best to be aware, I was one of them.
My uneducated understanding of all this (apart from being low on vitamins) is I have subclinical hypothyroidism. I believe I am a poor converter of T4 from past experience with levo always making me a lot worse.
My bloods also show inflammation, circulation issues and a sluggish liver.
Possibly pituary disease due to low IGF1 and SHBG too (I have all the symptoms for these and did have a traumatic head injury some years back)?? But I have read elsewhere these need T3 so may be a chicken and egg situation, one is causing the other?? Musing aloud here....
Not really subclinical, no. That's just a word doctors use to avoid treating patients. You are hypo when your TSH gets to 3.
How much levo were you taking when you were taking it? If the dose was small - 25 mcg - that is almost certain to make you worse rather than better.
I would have said that your TSH is too high to indicated a pituitary problem. IGF1 is not actually made by the pituitary, It is produced by the liver. It is tested when investigating the liver because it is a good indicator of HGH - a pituitary hormone - and is easier to test for than the HGH itself. But, it can be low when HGH levels are normal. So, low IGF1 levels don't necessarily indicate a pituitary problem. But, you're right, good levels of T3 are needed for optimal levels of HGH. And, good levels of HGH are necessary for optimal levels of T3. However, that would not explain your high TSH and low-ish FT4.
2-3 weeks before I had to come off due to VERY severe reaction I could not tolerate and "see through" to the other side of it, if there was another side. Within 24-36 hours off it, I was okay (for me) again.
No I did not try increasing it as it was bad enough as it was on 50 mg.
The first few days, I noted more exhaustion and general feeling achy, lower mood etc. This is typical of me on levo in the past - I feel worse. That would be bearable in and of itself if there was the possibility that things would improve as I tapered up/got used to it. However, this last time on the Northstar, I started to feel very blue. It was a chemical not reactive depression to any circumstances that got worse by the hour. It was overwhelming, like the post natal baby blues few days after birth. I have never been like this. I was VERY very close to topping myself, it was that bad. If I had stayed on levo. I would no longer be here. It really terrified my other half as he felt helpless. I was not myself at all.
Well, not to diminish the way you felt, but that does often happen when one starts thyroid hormone replacement - especially if one has been hypo for a long time. Existing symptoms exacerbate, and new ones appear.
That would be bearable in and of itself if there was the possibility that things would improve as I tapered up/got used to it.
How do you know it wouldn't?
Have you had cortisol tested at all?
You are now pretty hypo. And your nutrients are low. So, I would suggest optimising your nutrients and then try levo again, on a different brand.
An alternative to levo is, of course, NDT, but that is almost impossible to get prescribed, and not easy to self-fund. And, that doesn't suit everybody, either. It can be difficult to find what is right for you.
>>Well, not to diminish the way you felt, but that does often happen when one starts thyroid hormone replacement
Sure, all I know is it happened to me and was absolutely related to the T4. It was not at all expected. I was not surprised by the increased fatigue and all around rubbish feeling though as that has happened quickly every single time before when I tried T4.
>>How do you know it wouldn't?
I don't. What I am saying is that if it were not for that awful reaction, I would be willing to try that brand of T4 on its own again, including the worsening of the preexisting symptoms (fatigue, weight etc) in the hope that would only be temporary with light at the end of the tunnel as levels increase after a few weeks. However, I refuse to try that T4 again as I cannot make myself so depressed again as really I would not survive it.
I have read elsewhere since of some other people having this extreme reaction to T4. It could well indicate even more my suspicion that I convert poorly or fight T4 and need mono T3.
I am scared enough to try a new brand of T4 which is what my endo is suggesting. If it works, great. But I am obviously apprehensive.
I had the 9am cortisol test - it was 398 nmol. However, I am on HRT and this may sway the reading?
Money aside, NDT would not work for me if I am a poor or non converter or have high levels of Reverse T3. I may get these extra blood tests including the genetic one for deodinase but I know not everything on a cellular level shows up as amiss even then.
My Gp did a coeiliac test few years ago and said I was fine by their standards. I have also fasted or semi fasted ultra low carb for months at a time so cut out all dairy and grains and gluten etc yet many hypo symptoms remained so I am unconvinced that that exclusion diet is the answer for me.
My endo did say he would try me on a different brand of levo. I was on Northstar 50 last time. Not sure what was tried before over the years.
Is Wockhardt and liquid levo available on the NHS?
My GP plan was to test me every 6 months after giving me levo (testing just the TSH of course!), and never mentioned a dose increase plan or anything! Hopeless
However, I could not tolerate levo for 6-8 weeks and see it through if I react as badly as last time to the starter dose. It was intolerable.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I have tried gluten free for 5-6 months on a few occasions, and like I say, hypo issues remained. However, I was always ultra low carbing and ultra low cal at the same time which may have skewed results, I don't know.
Yes, Wockhardt is available on the NHS - I take it. Liquid Liothyronine is available on the NHS but is extremely expensive so GPs are reluctant to prescribe it. If and when you have tried all brands available it may mean you’ll have to give the liquid a try but you’ll possibly have a fight on your hands.
Only start one supplement at a time, then wait at least 10-14 days to assess before adding another
Low folate and low B12
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid). This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Dose of levothyroxine is increased slowly upwards from 50mcg starting dose in 25mcg steps over several months, until typically on approx 1.6mcg levothyroxine per kilo of your weight
Bloods should be retested 6-8 weeks after each dose increase
Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
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Help with test results please
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