Hi I am new, I was diagnosed with hypothyroidism in June 2013 and I take 150mcg Levo. I have not felt completely well on this. I supplement but feel no better on what I take. Please see all results:
TSH 13.2 (0.2 - 4.2 mIU/L)
Free T4 12.8 (12.0 - 22.0 pmol/L)
Free T3 4.0 (3.10 - 6.80 pmol/L)
Thyroid peroxidase antibodies 279 (<34 IU/mL)
Thyroglobulin antibodies 285.3 (<115 IU/mL)
Ferritin 35 (30 - 400 ng/L)
Folate 2.1 (2.5 - 19.5 ng/L)
Vitamin B12 233 (190 - 900 pg/L)
Vitamin D (25 OH) 48.8 (25 - 50 nmol/L vitamin D deficiency. Supplementation is indicated)
Thanks
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kylarae
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iirc, Clutter has commented on this topic (sweats and tremors) to someone else with similar concerns today. If she doesn't see this, I'll see if I can find her response.
There's a great many of them suffering from doctorstupiditis at the moment, unfortunately the idiot pills are only a placebo and are of no real benefit.
No hope for the doctorstupiditis soon then SeasideSusie ? kylarae I can vouch that the sweats and tremors will reduce as your treatment improves and you get to the right dose of Levothyroxine. Hope you are soon feeling much better.
Kylarae, how do you take your thyroid hormone? Because you would seem to have a serious absorption problem, there.
Do you take it on an empty stomach, with just water, and leave at least an hour before eating or drinking anything other than water? Do you leave at least four hours before taking your vit D? Two hours before taking your folic acid?
Do you suffer from acid reflux? And, if so, are you taking PPIs? Something is stopping you from absorbing your levo. Your TSH shouldn't be that high on 150 mcg.
I take it on an empty stomach with just water and leave at least an hour before eating or drinking anything other than water. I leave 12 hours before taking vit D and 4 hours before taking folic acid. I suffer from acid reflux but not taking PPIs
The context for my comments on your blood test results is that an appropriately-medicated hypo patient tends to find that their symptoms improve when the TSH is suppressed to <1 as that goes hand in hand with what is necessary to push FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. When FT4 is improved then that is in a virtuous circle with having enough FT3 to feel well.
TSH 13.2 (0.2 - 4.2 mIU/L) You are not only out of the normal reference range - you are above the level at which a previously undiagnosed person would, without any hesitation, be diagnosed as hypothyroid. You are taking levo. and your level is probably best at <1 (there's some individual variation) so it's miserable that your level has been allowed to go up to this number.
Free T4 12.8 (12.0 - 22.0 pmol/L) Your level is just above the floor of the reference range, and you need it in the upper part of the range.
Free T3 4.0 (3.10 - 6.80 pmol/L) You are in the lower third of the reference range and you need it to be in the upper part of the range.
Thyroid peroxidase antibodies 279 (<34 IU/mL)
Thyroglobulin antibodies 285.3 (<115 IU/mL)
You have raised antibodies that are typical of Hashimoto's - the commonest root of hypothyroidism. I'll have more to say about this below.
Ferritin 35 (30 - 400 ng/L) Within the reference range. You might have seen from SeasideSusie 's responses to people with similar numbers that patients with Hashimoto's tend to report better results when their ferritin levels are around 70.
Folate 2.1 (2.5 - 19.5 ng/L) Your folate level is below the reference range but it looks like you've only just been prescribed supplementation for this so we might need to wait and see what happens.
Vitamin B12 233 (190 - 900 pg/L) Hmm. My difficulty with this is that when there is a folate deficiency that might be folate anaemia, the inter-relationship between folate and B12 is so complex, that if your B12 is in the lower part of the range, then it's a wise precaution for your GP to assess you for B12 deficiency *before* you start folic acid. The folic acid can interfere with the results of other B12 tests. You'll see this from a Seaside Susie reply on this topic (I'll edit one in if I can find it).
Vitamin D (25 OH) 48.8 (25 - 50 nmol/L vitamin D deficiency. Supplementation is indicated) You are below the 'adequate' range. Again, Seaside Susie has excellent suggestions for this. 800IU is typically a maintenance dose for someone with previous deficiency who has been supplemented to an optimal level *before* switching to a maintenance dose: you're not there and I doubt you will reach it with just 800IU a day. You probably know this as you've been supplementing since late 2015.
I'm belabouring this because Hashimoto's is a fellow traveller with poor gut absorption which affects patients' vitamin and mineral levels and this affects how well thyroid hormones work. The experience of members here is that there needs to be a watchful eye on the levels of thyroid hormones and vitamin and mineral levels because there's a difference between something being within a reference range and being in a part of the range that is optimal for effective use of thyroid hormones (whether our own or supplemented/prescribed ones).
ETA: a Seaside Susie reply with relevant information to someone with some similar numbers: healthunlocked.com/thyroidu...
I should add that SlowDragon has advice on dietary modifications for patients with Hashimoto's.
I totally agree that you are under medicated. Your doctor should know this from your results so please get back to them. What exactly do you supplement with, you don't say. At one time in my treatment I went up to 200mcg thyroxine then gradually down to 150mcg which I've been on for years. Good luck
I think that until your thyroid levels are correct you can feel so strange that you look to supplements and all sorts to try to feel better. I spent a small fortune on homeopathy looking for a solution before I was properly treated and stabilised.
I’m not an export, but it looks as though you’re body is not converting your Levo (Synthetic T4) into T3, so ask your Doc to CHANGE your med to SYNTHETIC T3 (Liothyronine) instead, and your should see your TSH value drop to the ideal level of 0.3.
Your other unsettling bloods might correct themselves over coming months as a result of taking T3, too....
Above all don’t neglect the importance of a healthy diet..
With a TSH of 13.2 there's no way to know how well the OP is converting. TSH has be be down to around 1 and nutrient levels optimal to see that. So at the moment it's a case of addressing the absorption problem and Hashi's, optimising the nutrients and increasing Levo. Once all that's done then we'll be able to see whether T3 is needed. And in the UK it's almost impossible to have it prescribed on the NHS due to cost and doctors denying it helps.
So those results indicated poor conversion, it appears you've not given us the full story.
So if you had T3 prescribed at that point, what happened since?
Why are you no longer taking T3?
When was T3 removed?
What dose of Levo did you have instead when the T3 was removed?
Has that changed since?
If these are your current results on 150mcg Levo:
TSH 13.2 (0.2 - 4.2 mIU/L)
Free T4 12.8 (12.0 - 22.0 pmol/L)
Free T3 4.0 (3.10 - 6.80 pmol/L)
what has been said about them because you are very clearly grossly undermedicated?
**
Thyroid peroxidase antibodies 279 (<34 IU/mL)
Thyroglobulin antibodies 285.3 (<115 IU/mL)
You have autoimmune thyroiditis aka Hashimoto's and this needs addressing. Unfortunately very few doctors attach any importance to antibodies and don't know what Hashi's can do to a patient. The antibody attacks gradually destroy your thyroid, and the attacks can cause fluctuations in symptoms and test results. You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's causes gut and absorption problems and this needs addressing. See SlowDragon 's reply to this post on how to help this problem healthunlocked.com/thyroidu...
**
Poor absorption trashes nutrients which clearly shows with your levels, so tackle the absorption problem and then optimise nutrients.
Ferritin 35 (30 - 400 ng/L)
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.
You need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
Such a low level of ferritin often indicates iron deficiency anaemia. You need a full blood count and iron panel. If they've already been done and you have a diagnosis then you need treatment with 2 or 3 ferrous fumarate daily and you should take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
Depending on how long you've been taking folic acid, if your level hasn't improved you need to ask your GP why. He needs to check for absorption problems.
You should post on the Pernicious Anaemia Society forum with these results, also quote your ferritin result, iron deficiency anaemia information if you have it, and any signs of B12 deficiency you may be experiencing. Be aware that taking folic acid masks signs of B12 deficiency so think back to before you took it.
If you do have any signs you will need further testing, and this should be done before taking folic acid, and B12 started before folic acid, so you will need guidance from the PA forum about that.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
**
Vitamin D (25 OH) 48.8 (25 - 50 nmol/L vitamin D deficiency. Supplementation is indicated) taking 800iu D3
Nowhere near enough, it will take forever to raise your level with 800iu. You need 5000iu daily for 3 months then retest.
When you've reached the level recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
As you have Hashi's the best absorption will be with an oral spray eg BetterYou. They do a 3000iu dose, so take a double dose to give 6000iu for 3 months.
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Address the absorption problem so that nutrients can be absorbed, get nutrients to optimal levels so that thyroid hormone can work, then when all the building blocks are in place you can see how your conversion is and T3 can be added back in if indicated.
Shame doctors don't know this very basic stuff about treating Hashi's/Hypothyroidism.
I had 2 lots of stable results with the levothyroxine and T3 then they went all over the place. I had overmedicated results when I was continuing the T3 and it was removed June 2017 and my dose has changed since and those are my current results. Endo says he doubts I've been taking the 150mcg levothyroxine every day
Endo says he doubts I've been taking the 150mcg levothyroxine every day
There is the proof that your endo doesn't have a clue about Hashi's and he's now playing the "Blame the Patient" game. We hear a lot about that on here. It's either that the patient isn't taking their Levo as prescribed or they're abusing it. But what it actually means is that he purely and simply doesn't know what Hashi's does. He's also probably a diabetes specialist, most of them are and really don't know much, if anything, about treating the thyroid.
When your results were all over the place, then you had overmedicated results, those were the results of Hashi's "swings" or "flares".
When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a doctor knows about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.
The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.
This is where addressing the Hashi's with a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily can help as it reduce the antibodies, as can keeping TSH suppressed, if the antibodies are reduced then the likelihood of Hashi's flares are reduced too.
So, who is doing what about your dreadfully undermedicated results now?
What you really need to do is ditch this useless endo. Email louise.roberts@thyroiduk.org for the list of thyroid friendly endos. See who is in your area then ask for feedback on the forum for any you can get to. Then ask your GP to refer you to your chosen endo.
And if your GP has had anything to do with poor or non-treatment of your very poor nutrient levels, then see another GP or change surgeries.
What were your overmedicated results in June this year? When on T3, your TSH could well be below range, but as long as your FT3 read was okay, then that's fine.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
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