My name is Abi I am 33 years old. I have hypothyroid which was found routinely in 2012 but I started treatment in 2013 when my TSH was high enough.
My TSH at the moment is 4.80 (0.2 - 4.2) FT4 14.8 (12 - 22) FT3 3.7 (3.1 - 6.8) on 175mcg levo
In October TSH 0.03 (0.2 - 4.2 FT4 20.8 (12 - 22) on 150mcg
I have had periods of being off levo when I lost a lot of weight unexpectedly and my TSH mysteriously went down from 5.01 (0.2 - 4.2) FT4 18.3 (12 - 22) to TSH 0.02 (0.2 - 4.2) FT4 20.3 (12 - 22) FT3 6.9 (3.1 - 6.8)
Symptoms list
Migraines
Depression
Confusion
Sensitive to cold
Loss of appetite
Dry skin
Anxiety
Periods clotty
Tiredness
Eyelids feeling heavy
Weight gain
Endo says no increase because results all over the place time to find a new endo maybe?
Thanks in advance
Abi
Written by
cottlea
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You have autoimmune thyroid disease aka Hashimoto's which is where the antibodies attack the thyroid and gradually destroy it, the antibodies fluctuate and causes fluctuations in test results and symptoms.
In addition you have an endo who doesn't understand this, he is probably a diabetes specialist, most of them are, and know little about the thyroid.
I'm not sure why they repeated antibody testing. Once confirmed Hashi's that's it, no point in testing again.
I wouldn't bother with an endo at all, especially one who has ignored all these raised antibody levels.
You should address the Hashi's by being strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily which can help reduce the antibodies.
Thank you I had antibody tests repeated by different GP practices. I felt like I wasn't being listened to when I kept going back to them with symptoms and when they didn't investigate further and they started thinking about giving me antidepressants I left to go to another surgery and antibody tests were repeated again
I supplement vitamin D and B12 and iron and folate I haven't noticed a difference in symptoms and I will post these now
Below range ferritin and MCV found in 2012, nothing done about it until 2013 when I was given iron tablets. Could only manage 1 iron tablet out of 3 and this carried on until 2016 when I was given an iron infusion and given a maintenance dose of 210mg ferrous fumarate to take once a day for 8 weeks. I am looking to add liver to my diet even though I don't like the taste of it
Dec 2017
FERRITIN 37 (30 - 400)
MCV 80.1 (83 - 98)
MCHC 358 (310 - 350)
MCH 28 (28 - 32)
HAEMOGLOBIN 120 (115 - 150)
HAEMATOCRIT 0.41 (0.37 - 0.47)
IRON 9 (6 - 26)
TRANSFERRIN SATURATION 14 (12 - 45)
PLATELET COUNT 253 (140 - 400)
RBC 4.41 (3.80 - 5.80)
WBC 7.13 (4.00 - 11.00)
Given folic acid to take this month, GP looking at possible coeliac disease
May 2017
FOLATE 2.3 (2.5 - 19.5)
Diagnosed vitamin D deficient in 2013, given 800iu tablets but because of my trouble swallowing could not take these so switched to Better You oral spray instead, I was taking 1000iu but I now take 3000iu with K2-MK7 since September 2017 and have added magnesium topical spray
Dec 2017
VITAMIN D 50.8 (50 - 75 suboptimal. Advise on safe sun exposure and diet)
Recommended to start B12 injections because my level was below 400 and I had neurological symptoms. Symptoms have improved since starting the injections but the improvement only lasts for about 2 weeks, is it ok to top up? Injections started Feb 2018, have had second one so far. Due another this month. No idea what levels have been since taking the injections
(I will post Blood test) Endo expressed no high Antibodies on my blood test!
*I did have Surgery for Hyperthyroid 21 years ago, had no issues until the last 2 1/2 years . *
My TSH have gone from 6.5 to 15.5 and I am on Thyroid medication.
Had this issue for almost 2 years. I feel like I am dying. I might have Tertiary hypothyroidism, or some idiopathic disease.
I am fairly sure my Adrenals of Pitutary are not working properly.
They have ran test but no blood test are showing the true issue that they have ran. My Endocrinologist seem aloof or puzzled as to why my TSH is going higher and higher from 6.0 to 15.5 and yes I lost my gallbladder have Bile Reflux.
I am extremely ill and can hardly eat much of anything, although I do try to take supplements when I can. Most all Fats especially Beef Meats I can no nonger digest at all.
I do eat Gluten free, I did start eating Gluten free shortly after losing I lost my Gallbladder .
My Immune System seems to be attacking itself. I am ill.
You would be better making your own thread. That way more members will see it and be able to comment.
From what you have written here, it's not something I think I can offer any suggestions for, but someone else might be able to.
Please post any test results you have, and include the reference ranges as they are very important (they vary from lab to lab).
Also, please remember that no-one here is medically qualified, cannot diagnose or advise, they can only go from their own experience and research, which may or may not be appropriate or helpful to your particular case.
It looks like you've basically got these covered. I would suggest you increase the Vit D spray for now to 6000iu daily for 4 weeks then back to 3000iu for 8 weeks then retest.
When supplementing B12 we need a B Complex to balance all the B vitamins.
You can top up between B12 injections with either sublingual methylcobalamin lozenges or self injecting.
SlowDragon has lots of information and links about gut/absorption problems. Check out her replies on other threads by clicking on her username, she may be along later.
(I will post Blood test) Endo expressed no high Antibodies on my blood test!
*I did have Surgery for Hyperthyroid 21 years ago, had no issues until the last 2 1/2 years . *
My TSH have gone from 6.5 to 15.5 and I am on Thyroid medication.
Had this issue for almost 2 years. I feel like I am dying. I might have Tertiary hypothyroidism, or some idiopathic disease.
I am fairly sure my Adrenals of Pitutary are not working properly.
They have ran test but no blood test are showing the true issue that they have ran. My Endocrinologist seem aloof or puzzled as to why my TSH is going higher and higher from 6.0 to 15.5 and yes I lost my gallbladder have Bile Reflux.
I am extremely ill and can hardly eat much of anything, although I do try to take supplements when I can. Most all Fats especially Beef Meats I can no nonger digest at all.
I do eat Gluten free, I did start eating Gluten free shortly after losing I lost my Gallbladder .
My Immune System seems to be attacking itself. I am ill.
The idea that thyroid levels are more significantly affected by gluten or by vague indirectly related to thyroid supplements yada yada than the actual hormone we produce, or take as medicine or how our system feedback control and conversion works, is far fetched and to read some people reciting it as a mantra on here seems almost hokey quackery with little research based evidence..... is it a case of the emperors new clothes.....
On the other hand it seems you have been taking quite large amounts of t4 which in excess will throw off your bodies inbuilt allostatic systems e.g. overdosing t4 will reduce conversion of t4 to T3 and have destabilising effects on the hypothalamic pituitary axis control loops. Your periods of suppressed TSH (0.0something) are possibly more of a negative thing than 4.8, which may be because t4 medication was too high, slowing T3 conversion or generally confusing your delicate feedback mechanisms, moderately high tsh such as this with low range T3 levels could also indicate you need a small T3 supplement and less t4.
As you home in on the right levels for you it takes several weeks if not months for the body to settle and even then it is easily perturbed by change in physiological need eg cold or activity and the loss of fine control of a healthy thyroid is very difficult to replicate so at best we are likely to be sometimes over and sometimes under medicated- the challenge is to even out these swings and minimise the effects
There’s also some info going the rounds among researchers that Hashimoto is not categorically defined by relativity moderate raising of antibody levels, despite them being over the lab ranges, mine are 10 x or more higher than yours for example......
I have all your symptoms when my body is adjusting to levothyroxine or if it is simply too much (at which point it doesn’t adjust it just keeps crying for me to stop taking so much of the damn stuff.)...
Why not try less and less levo and take monthly bloods for tsh T3 and t4 and if T3 remains low and tsh starts to show a rising trend then consider taking .5 to .75 microgram of T3?
Why pursue sub zero tsh!? Just because dr toft or all these other ‘gurus’ advocate suppressing tsh below euthyroid norms (1-3 units) doesn’t mean it’s right for you and there’s precious little research based evidence for it as a general position for correction of hypothyroidism !
Hi, it is interesting to read another viewpoint, thank you. Sorry to be jumping in on someone else’s thread. But can I ask how to know where the point of the right levels are reached?
Is it based on symptoms or T4 and T3 levels?
I was only diagnosed at the end of last year and have increased to now 75mg, it is a long slow process and I would like to know how to proceed. My GP is old school but ok so far with my requests to increase T4 supplement. But I need to know how do I know that I am at the right level!
Lab ranges are lab ranges not your range, your range probably very narrow and not well defined by lab reference ranges i.e. you can be in a lab range but be under or over medicated and feel unwell
Lab ranges something to shoot at but keep a symptom and medication and blood test diary, every day! You need to find your range!
Blood tests have to be the holy trinity - TSH T3 T4 do them monthly or whenever you change meds or feel particularly well or particularly unwell - if you can afford it!
Don’t go by TSH alone, triangulate all three, if all three are in range AND symptoms ok then you’re getting somewhere
It takes weeks or months to iron out peaks and troughs and stabilize
You may never be bang on all the time, even methodically adjusting doesn’t match the fine control of healthy thyroid system
Too much t4 as bad as too much T3 but in a different way! Takes much longer to feel the effects of reduction and can build up insidiously
You may actually need some T3. Probably not the non-physiological levels some on here promote!
you may need the T3 supplement for homeostatic signaling as much as doing T3 work! The healthy thyroid produces 7-10 microgram with the 70 -100 mcg of T4, very roughly speaking, so why not aim for those kind of replacements......
I'm confused about why your levothyroxine was increased to 175 mcg. given your low TSH of .03 on 150 mcg, and your thyroid hormones also looking well in range.
By increasing your dose to 175 mcg. you are now getting into suppressive therapy, where doses of 200 mcg or so are prescribed to intentionally suppress all thyroid activity, for instance if someone has a goiter, thyroid nodules, etc.
Suppressive therapy is versus replacement therapy, which is typically at doses like 100 - 150 mcg.
More thyroid hormone is not always better, particularly (in my opinion) when you are totally suppressing and replacing all of your own natural hormones with a synthetic.
The huge change in your TSH does bear some investigating, and I don't think adding or changing vitamins, supplements or your diet will have any effect on your TSH.
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I think I did something wrong with my 150/175mcg dose
Dose reduction
T3 taken away, looking for a new source please :)
Newbie - do I give up?
