My thyroid results over the past 3 years have all shown normal TSH but low T4/T3. I’ve had all the symptoms of either low cortisol/low thyroid and despite 2 endos telling me my results are absolutely normal, I decided to start levo at 50mcg approx 8/9 weeks ago. I tested at 6 weeks and my t4/t3 had increased but so has my weight! I’ve had some really good days where I feel energetic and bowels work, brain fog clears but I’ve had more bad days and constipation, bloating, and now weight gain. I’m now at the point where I don’t think levo is for me, I’ve tried increasing by 12.5 and 25 and it just makes me feel more hypo. I wonder if it’s central hypo I have and that the levo is comprising my adrenals. Any feedback is appreciated.
Should I stop levo?: My thyroid results over the... - Thyroid UK
Should I stop levo?
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Jamima
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SlowDragonAdministrator
Please add most recent thyroid and vitamin results
Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Yes, I followed all the usual protocols for testing. I’m still having surges of what feels like adrenaline at 5pm and 11pm, it’s that precise. And terrible water retention and swelling from 5pm.
Would also be a good idea to give us some of your results from before you started levo, for comparison. You could well have had Central Hypo - which doctors (including endos) know next to nothing about. But, we can't know without seeing the numbers. 
These are my results before and 6 weeks after starting 50 levo. My eating hasn’t changed, in fact, I’m eating less to try and reduce the weight that’s rapidly piling on my trunk. It feels and looks like water gain.
Results 3/3/22
TSH -1.03 (0.27-4.2)
Ft3 - 3.9 (3.1-6.8)
Ft4 - 12.8 (12-22)
Results 18/5/22 - same range as above
TSH - 0.07
Ft3 - 4.98
Ft4 - 16.3
Well, that certainly does look like Central Hypo. Did any of your doctors test for other pituitary hormones?
Trouble is, doctors only tend to look at the TSH. They don't even know much about the actuall thyroid hormones: T4 and T3. So, your TSH is pretty much perfect. It's the FT4/3 that are abnormal - far too low.
And, they're still too low, so you're probably having symptoms because you're under-medicated, and need a 25mcg increase in levo.
Thank you, I’ve tried a 25 increase, several times and it makes me ill - more hypo, thick, foggy head, constipated, bloated, swollen. I really think there’s something else going on. The water retention is very noticeable when I increase.
Have you had your nutrients tested: vit D, vit B12, folate, ferritin? How about cortisol? Has that been tested?
If you do have Central Hypo, caused by a mal-funtioning pituitary, then your cortisol probably is going to be low, and so are other pituitary hormones. That's is why I asked if anyone had tested them. And any hormone that is out of kilter will make you feel bad. They need to be tested, but only an endo can do them, I'm afraid. And, that endo needs to be convinced that their is a pituitary problem. And, while you're self treating that proof is not going to be visible. So, you have some hard choices to make. But, you are hypo, that's for sure, and will eventually need thyroid hormone replacement.
Thank you Greygoose. I had a short synacthen about 3 months ago and I passed that so the endo said it wasn't an adrenal problem. I've had my own tests of LH, FSH and Prolactin and the prolactin was very high at one stage but now normal.
No, it wasn't an adrenal problem. It was a pituitary problem. That's what the test is for, to see if the adrenals have stopped working themselves, or if they're not working well because they're not getting the stimulus they need from the pituitary. Why do so many doctors not understand that???
Well, I passed it so presumably that's a good thing.
I'm getting a bit confused here. Did you say somewhere that your cortisol was low? Or not?
Hello grey goose - yes, I had a 4 point cortisol test and it showed low cortisol and Shea but it was a while ago, I also had my testosterone tested a few months ago and it was so low they couldn't do the androgen index. I know there's some connection between adrenals and androgens.
saliva cortisol test
My testosterone in march this year 0.087 (0.101-.42) - no androgen index as T too low. My LH was over range but that could be because I'm post meno 62.9 (7.7-58.5).
OK, so presumably that is why they did the SST test.
Having low cortisol can be caused by two possible things - just like having low thyroid hormone.
1) the gland itself - thyroid/adrenals - is failing and can no-longer make enough hormone to keep you well.
2) the gland itself - thyroid/adrenals - is perfectly healthy but is not getting the stimulation it needs to make hormone.
For the thyroid, the stimulation comes in the form of TSH.
For the adrenals the stimulation comes in the form of ATCH.
Both are pituitary hormones.
With the thyroid, you can tell which cause is the problem by testing TSH/FT4/FT3. If your TSH is high and your FT4/3 are low, then it is the thyroid at fault. If the TSH is low, but also the FT4/3, then the problem is (probably) the pituitary.
For the adrenals, they do the short synacthen test to find out if it is the adrenals or the pituitary at fault.
So, I really don't see how you can pass or fail that test. If the first cortisol test is low, and they inject the synacthen and the adrenals respond, that means that the adrenals are healthy, but the pituitary is not stimulating them correctly. If they don't respond then it's the adrenals themselves at fault. Which is the win and which is the fail? That doesn't make any sense to me.
Thank you, that makes a lot of sense. The most important part of diagnosis I always think, is listening to the patient, and looking at them. My last endo diagnosed me with CFS, based on test results, I was in her room no longer than 20 mins, still wearing my coat and mask. She wasn’t interested in what I had to say, she’d already decided I had CFS and needed to re-start hrt, despite me telling her I’d tried to re-start hrt several times and it made me ill. But she’d be very happy to write me a private prescription for a different type - I bet she would.
I suspect, and my body is telling me that there’s a cortisol issue in tandem with thyroid. Is it possible that getting thyroid levels optimum will resolve the cortisol issue or will I have to stop levo, wait 6-8 weeks, re-test and find an endo who might help?
If the problem with both the thyroid AND the adrenals is the pituitary - and I'm inclined to think it is - then optimising thyroid levels will have no effect on the cortisol. Because it will have no effect on the pituitary.
I think your best bet is to find an endo that understands these things, but I'm not sure I would stop the levo, If I were you. just explain that you're self-treating because no-one will listen to you.
What, exactly, did your doctor say when he told you you'd 'passed' the SST test? Because I just don't understand that. I have the impression that he didn't really understand what he was testing for.
It was my nhs endo who tested at my request. I think he was testing for cortisol, but as you say, it only tests for ‘cortisol response’ after stimulation and I passed that but that doesn’t tell me what happens on a day to day basis of normal cortisol production. I’ll stay on levo at 50 as overall, I feel better, I’ll try a couple of days small increase as suggested and I’ll order another cortisol saliva test to see what’s happening. Would levo interfere with cortisol test? How should I dose when testing?
Yes, that's right, and as I see it, the fact that the adrenals responded to stimulation means that there is no problem with the adrenals themselves, but there is a problem with the pituitary. And, that's what he should be concentrating on, not the fact that the adrenals are healthy. And, that's the bit I don't think he's understood.
I don't think levo interferes with cortisol testing, no.
SlowDragonAdministrator
What vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
Have you had coeliac blood test done
Are you on, or tried absolutely strictly gluten free diet
Do you have any T3 to try adding?
hello slowdragon - I'm taking igneous b-complex x 1 per day a sublingual VitD+K2 daily and 1-2000 Vitamin C daily. I've had a coeliac test but I'd stopped gluten when it was done so it probably doesn't count. I do suffer if I eat gluten (particularly bread or pasta) so I've stopped it unless it's a special occasion when I'd have a small piece of cake or something. I don't have any T3, would that be a consideration for me? Apparently my conversion is quite good.
If you’re gluten intolerant it takes 4-6 months for gut to recover each time you eat gluten
Gluten free diet needs to be absolutely strictly gluten free to be effective
Suggest you try increasing levothyroxine extremely slowly
Add 12.5mcg extra twice week…not on consecutive days
Waiting 6-8 weeks
Then add 12.5mcg so taking 3 days etc etc
Ok, I'll try that, thank you.
What brand of Levo are you taking? It could be the fillers that are causing your symptoms. I only ask because I had the same problems with Northstar and Mercury Pharma. The only Levo I can tolerate is Wockhardt.
Hello Gingernut44 - I'm taking Euthyrox 50mcg.
Might be a good idea to take a look at the inactive ingredients (the fillers) as it’s usually those that cause the problems. Of course, if you’re self medicating, I don’t know how easy it would be to change brands. Have you looked on helvella’s list as he mentioned in one of his replies?
I haven't looked but will do, thank you.
Looking like Euthyrox contains mannitol
Do you have an ingredients list in the box
Mannitol is an issue for lots of people taking Teva levothyroxine
No, there's no list on the box it just says 50mcg levo sodium.
Might not be same
euthyrox-instructions.com/c...
Other ingredients: corn starch, croscarmellose sodium, gelatine, magnesium stearate, citric acid, mannitol.
Thank you, I'm not sure how I'd know as there's no list. It may have come with a leaflet which I've thrown out but I've recently ordered another box so I'll see if it has a leaflet. Presumably if the drug SPC says as above, then they all contain the same across the brand?
helvella may know if euthyrox still always contains Mannitol …..I suspect it does
It caused huge issues in France when formula was changed from lactose to mannitol
Forced to bring old version back on market
science.org/content/article...
connexionfrance.com/article...
Compensation payments as result
pmlive.com/pharma_news/merc...
And a post discussing mannitol by Helvella
healthunlocked.com/thyroidu...
At present, I believe that Euthyrox varies between lactose and mannitol. Depends on where it is made and which market it is being sold into.
Further, I think that all EU Euthyrox probably now contains mannitol.
I had a short synacthen about 3 months ago and I passed that so the endo said it wasn't an adrenal problem.
With such low cortisol levels I'm amazed that you passed the SST.
Did the test you did include a test of your ACTH level?
If it didn't then the test was incomplete and could not have been used to diagnose secondary adrenal failure.
A complete Short Synacthen Test is described on pages 68 - 70 in this document :
imperialendo.co.uk/Bible201...
What often happens is that the cortisol sample is taken at the start of the test but the ACTH sample isn't. If it isn't taken then you haven't been properly tested.
Hello humanbean. I don’t think there was an acth test, they didn’t mention it. A couple of blood samples before and after the synacthen. I don’t have the results of that test, can I request them?
You should be able to request your results. Your best bet is to write a letter to your GP or the hospital, and ask. I don't know whether Short Synacthen Test results are sent to GPs.
This is my understanding of what happens when the body creates cortisol (and I could be wrong!)
1) The hypothalamus creates more or less Corticotropin-releasing hormone (CRH) in response to levels of cortisol produced by the adrenal glands.
2) The pituitary creates more or less Adrenocorticotropic hormone (ACTH) in response to the levels of CRH produced by the hypothalamus.
3) The adrenal glands create more or less cortisol in response to the levels of ACTH produced by the pituitary.
4) Go back to 1 to start the cycle again.
See this picture for a representation of the above :
en.wikipedia.org/wiki/Hypot...
...
A) So, in the Short Synacthen Test (SST), the patient has a blood sample taken to test for levels of cortisol.
B) Then they are injected with ACTH to make the adrenal glands produce more cortisol. After a certain length of time another blood sample is taken to test for cortisol to see how well the adrenal glands responded to the ACTH.
C) If the amount of cortisol produced is "normal" then the patient is told their adrenal glands are working fine and they don't have Primary Adrenal Insufficiency. Now go away and stop bothering the doctors.
...
But, hang on! What if the pituitary or hypothalamus isn't functioning well and doesn't produce enough ACTH? If there is insufficient ACTH even perfectly healthy adrenal glands won't produce enough cortisol.
Well, doctors tell patients who ask that this is very rare so there is no need to test for it. (And it saves money - woohoo!) Using that logic everyone on the planet can always produce sufficient ACTH, but it simply isn't true.
So at stage A above there should also have been a sample taken for testing levels of ACTH before any is injected. It needs to be taken, put on ice, and then immediately rushed off to the lab for testing ACTH.
If the ACTH level is low before the injection of more then it leads to the conclusion that there is something wrong with either the pituitary or the hypothalamus. It would require more testing to see which one is causing the problem. If the pituitary is at fault and isn't producing enough ACTH then the patient has Secondary Adrenal Insufficiency. If the hypothalamus is at fault and isn't producing enough CRH then the patient has Tertiary Adrenal Insufficiency.
Note that if the patient has secondary or tertiary adrenal insufficiency meaning the adrenal glands are never stimulated to produce cortisol the adrenal glands may eventually atrophy.
en.wikipedia.org/wiki/Adren...
...
From posts on this forum I have realised that ACTH is rarely tested for in the SST. Either that, or the patient is never told what the blood samples are actually testing. So, some patients can be told they have normal cortisol output, while never being properly tested.
If you get hold of the results of your SST, and there is no result for ACTH then you haven't been tested for secondary or tertiary adrenal insufficiency.
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