I’ve been feeling quite a bit better (which is a relief after the horrid time last year) so i am confused about my recent bloods and wondered if anyone might have a good explanation?
TSH 0.38 T4 20.6 T3 4.7 TPO 205 vit D 117 ferritin 99
Previously (Nov)
TSH 0.34 T4 22.7 T3 5.3 TPO 105 vit D 127 ferritin 135
These are normal fluctuations in thyroid hormone levels apart from possibly the drop in TSH after October. TPO anitbodies fluctuate but tend to die down in the long term, meanwhile they can be associated with irratic hormone release. If you are feeling well then don't worry about minor changes in hormone levels.
Thank you v much jimh111. When TPO ABs die down does that mean thyroid function is deteriorating? Ah interesting about hormone release. Any particular hormone eg sex hormones or cortisol ?
When the TPOabs die down, it means your thyroid is dead. And, they only affect thyroid hormones. And even then, not directly. It's the disease itself that causes the fluctuations, not the antibodies.
Highly unlikely. But, many people are not able to accept that.
Even if you did manage to reverse the autoimmunity, the damage done to the thyroid would still mean you were on thyroid hormone replacement for life. The thyroid cannot repair itself.
Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.
After every attack, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! Doctors do not understand Hashi's, and can assume that you've 'gone hyper', not realising what is actually happening.
If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course! But, there are things the patient can do for him/herself.
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better, and can possibly reduce the antibodies. Worth a try. But, you should be aware that even if you get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.
b) take selenium. This not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified by a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, but it also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Gosh i didn’t know this grey goose. Until last year I didn’t even know I had antibodies.
So if you keep TSH low then there will be less immune attack & lower antibodies ? Must be a good thing?
I am gluten free and am taking selenium. No change in diet or dose of Levo or supplements since November so I couldn’t understand why antibodies have gone up T3 has come down yet T4 constant & TSH constant.
I have heard and researched how majy people have reversed Hashimoto through diet & supplements. Are you saying this is not possible ?
I'm not convinced it is possible, no. Hashi's can go into remission for long periods in between swings, and people tend to believe that it's gone away. But that's highly unlikely.
The theory is that a suppressed TSH will reduce immune system attacks, but as doctors don't like suppressed TSHs, the theory is very rarely put to the test. By the time I was diagnosed, it was too late to find out! I had my last Hashi's swing at 50 and was diagnosed at 55. But whether or not it's a good thing, is debatable. Let's just say it can't do any harm to try.
Thank you. So when you had your last swing at 50 what symptoms did you have? Did you know at this time you had thyroid issues or was it just 5 years later you learned all this.
Well, I didn't know I had thyroid problems, no - I didn't even know what a thyroid was, at that point! I've worked all that out from what I've learnt, since.
Actually, I didn't feel bad when I had my 'hyper' swings. I felt great! Had a lot more energy, lost a lot of weight, hair grew thick and glossy. The symptoms crept in as I swung back to hypo, but that was about four years later.
When it's too late, the symptoms are just hypo symptoms. And that can be anything. Being hypo means you have low T3. T3 is the active thyroid hormone that is needed by every single cell in the body. So, the symptoms can be anything, anywhere. Any sort of ache or pain can be due to low T3 and therefore a hypo symptoms. Hypo symptoms are non-specific. So, you can't say this symptoms means your thyroid is dead, or this one means it's dying. It's all just hypo.
Well you’ve certainly learned a lot since! I too have lost hair recently but no change in weight only increased energy. So this sounds like hypo but in November when my T3 was at its highest (since I’ve had tests which only started last year when I got sick. Before that I just blindly took Levo & felt fine & only tested TSH & T4 annually ).
My T3 8 months ago was about 4 so it has increased over that time but seemed to reach a peak in November & now on way down. Whether that’s a permanent shift downwards remains to be seen.
So I guess what you’re saying is at some point (soon) my T4 will stop converting to T3 which will be an indicator that thyroid has packed up for good?
I wish it were true you could reverse autoimmunity- I’m following the diet etc but I’m beginning to think it may not happen. Sadly.
So I guess what you’re saying is at some point (soon) my T4 will stop converting to T3 which will be an indicator that thyroid has packed up for good?
No, I'm not saying that. When your thyroid dies, there won't be any T4, either, except for the levo you take. Conversion is nothing to do with the gland itself.
I take T3 only. Even though I converted very well, I could not tolerate T4.
I have no idea what you understood. But, I didn't say that worsening conversion is a sign that your thyroid is failing. I said:
* Hashi's people often have poor conversion.
* Eventually your thyroid will be completely destroyed and all hormone production will stop; you will be permanently hypo and totally reliant on thyroid hormone replacement - levo or other.
Yes, I did start on levo. But, I don't consider I had any side-effects. It was just that hypothyroid symptoms became grossly magnified! My weight gain increased, rather than diminished, my hair feel out more, I had more aches and pains, and became more moody and depressed. I'd always had pretty good nails, but they started to break and flake and become very soft and pliable. Well, this often happens, I've learnt since. And most people get over it as their dose increases. But, I got up to 150, and nothing improved - yet my FT3 wasn't bad. Two doctors later, I saw an endo that put me on a T4/T3 combo, and things did improve a bit, but there wasn't enough T3 in it for me - and, probably, too much T4. From there, I went onto NDT, and ended up a bed-ridden whale! It was only when I went onto T3 only that things started to improve.
Well I guess I mean the level where you’re not too symptomatic.
FT4 zero - I guess that’s why you are better off of Levo & only taking T3. Do you think that was a changing picture or do you think that’s just you & you only realised that’s what you needed through time & trial & error?
My vit D is 117 & ferritin 99. Do these sound low?
I’m not sure about the B vitamins. But I think B12 is always high as I supplement. What do the B vitamins need to be ?
I'm afraid I couldn't tell you at what level I'm not too symptomatic. Even with my FT3 over-range, I still have some hypo symptoms.
But, I can't go any higher because my heart goes mad! I came to the discovery that I needed T3 only after years of trial and error. I couldn't tolerate T4 right from the start, it just didn't occur to me that I could do without it until I started reading about rT3. So, no, I don't think it was a 'changing picture'.
Your vit D and ferritin levels depend on the ranges.
In a serum B12 test, the level should be at least over 550. Folate middle of the range.
Greygoose you have just worded what I have been trying to tell my GP!! It’s so frustrating to not be heard because I’m just a ‘lay person’ and I ought to listen to those who know better! I had my first ever Hyper episode after being on Levo for 8yrs. I’d had a high TSH of 14.something and went on to 175mcg within 6mths I went Hyper and stopped taking all meds for 10 days to try and stop the free fall, I then went on to 150mcg for 3days, taking 175 on the forth, then 150 for 3 days ect ect. At that point I felt sane enough to go do battle with my GP as I was still Hyper. After listening to the lecture on how I should never stop my meds, I then had a blood test and it was 0.09. I actually misheard her and thought I was 0.9 and began crying because I just couldn’t understand the Hyper symptoms when I’d actually worked out that when my TSH was around 1 then I usually felt good. Anyway long story short. She’s sending me to an Endo because she ‘doesn’t know what to do with me’ (quote). I said fine! In the 3mths that I’ve been waiting for this appointment I’ve been doing more research and ordered more blood tests. She fluffled them up to and so I’ve had 3 bloods taken in 6wks. She tried to tell me I was going into early menopause and at one point talked about fibromyalgia. I scoffed at both but let her do The menopause test (nothing but unreliable anyway)
TSH - 2.5 (0.35-5)
FT4 - 23.3 (9-24)
FT3 - 3.5 (3.5-6.5)
TPO - 86 (0-50)
So I believe I’ve just gone through an attack and dump and now have mild hypo symptoms that will in my view continue to become more acute. (I’ve had severe symptoms so I really know my body)
I’m just waiting for the results of my DIO2 test but unfortunately don’t think they’ll come through before my Endo appoint on 14/02/19
My GP had the nerve to call my pharmacist who ‘ambushed’ me when I picked my meds up at end Jan and by the sounds of it the two of them believe I’m a ‘non compliant patient’! 🤬 So I’m not holding out much hope for this Endo! I’ve just requested a change of GP and I’ve written a strongly worded email to pharmacist to tel him I will no longer require his services!
AND! No one has ever told me I have Hashis! I had to figure that one out in the year I was diagnosed. And no one has ever mentioned a faulty gene - only figured that out in that last year. An increase in Levo has always worked for me but I’ve always had to fight for it because I quite often come back within normal range. They’ve not always done the full thyroid bloods and it’s taken me years to get any info out of them as I’ve been made to feel foolish if I ask for my numbers.
Yes, when I asked for the last full function test I said I want to check my antibody levels and to see if I’m not converting well. She gave me ‘that’ look before telling me that antibodies don’t mean anything. My last TPO was when I was diagnosed. It’s usually at this point in most of my appointments with her that I just stare her down, let her ramble so I can hear just how little she knows before asking if she is refusing to put me forward for the blood tests 😩 She always has allowed me these tests as long as I do the ones that she wants as well. The problem is that it’s taking me a long time to research and understand what it is I’m looking for. I think I’m quite clued up myself but finding a professional who also is....... 🤷♀️ it’s a work in progress, it’s slow and painful.
Rather doubtful you will find a professional that's clued up. They're very rare! I've seen an awful lot of doctors in my time - including four endos. None of them really knew what they were talking about.
That’s v interesting Caze. Could you describe how they came on eg constant or did they come & go? How long did they last ? Every day & for how long ? Did they accompany general body heat & tingling too?
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