Hypothyroid with significant weight loss

[Health4I]

Hi

I shall be having private blood tests as the last I had on NHS was January.

I was diagnosed last year with hypothyroid and put on levo. Currently taking 75mcg. I am in a much better place to last year when I was struggling with symptoms, most notably severe leg, knee and bone and muscle pains. Debilitating at times! I am now back able to run and do exercise and generally feeling OK. I know I can't overdo it now though otherwise I will feel exhausted and wiped out so I am learning about what I can and cannot do.

One thing that puzzles me is that all through my life I have struggled with weight and at times been very overweight. Since being diagnosed and taking levo, the weight has fallen off me, to the point that I am the slimest I have ever been which is great but I am starting to feel like I am losing too much weight. People are saying this to me. This seems to be the opposite to what the majority experience with hypo e.g. putting on weight.

Any views or thoughts would be welcome. I do realise my bloods need to be done but thought I would ask beforehand.

Is it possible that I am overmedicated hence why I am losing weight and on a low dose of levo?

[Nanaedake]

You will only know the answer with blood tests. You need TSH, FT3, FT4, and if not done previously, TPO antibodies and TgAb.

Also best to check vit D, folate, ferritin and B12. Weight loss can have numerous causes.

What were your thyroid blood test results that resulted in the diagnosis of hypothyroidism?

[Health4I in reply to Nanaedake]

Thanks.

Original readings as follows:

TSH=5.13 (0.30-4.20)

FT3=4.05 (3.1-5.0)

FT4=13.7 (9.0-19.0)

TGAB=10 (0-155)

TPOAB=298 (0-34)

Folate=29.1 (8.83-40)

Ferritin=73.2 (44-150)

B12=64.8 (37.8-188)

VitD=24

Vitamin D and Levothyroxine at 75mcg being taken.

[SlowDragon Administrator]

Did you get coeliac blood test?

Or are you may be not eating enough gluten to test

Some people do struggle to maintain weight until optimally medicated

Previous post showed Likely under medicated

[Health4I in reply to SlowDragon]

Hi, yes last year the IgA test came back normal at 1.9CU (<19.0CU)

[SlowDragon Administrator in reply to Health4I]

Are you now on strictly gluten free diet?

you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

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

restartmed.com/hashimotos-g...

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.

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

[Ruby1]

It might be worth a visit to the GP if you’re worried about it. Weight loss can be a symptom of other things.

[Health4I in reply to Ruby1]

Yes, I agree but wanted to find out online first from others.

[Hidden]

I would go back to your GP Health41 if you are worried about your weight loss.

As Nanaedake said, were you tested for antibodies. I have Hashimotos.

With me and my experience only is that my Levo was too high (on 75 mg) and I went into Graves from Hashimotos. My thyroid went into overdrive. I am now down to 20 mg on Levo and NDT and better.

If this was the case for you, that might explain the weight loss.

As mentioned with the other posts, weight loss could mean other things.

I wish you the best with your health journey.

[tattybogle in reply to Hidden]

hi konamarie.

did you get actual Graves antibodies ?, or did you just mean you were 'overmedicated' on 75mcg ?

[Hidden in reply to tattybogle]

You can go into Graves from hashimotos by being over medicated as I was. Same antibodies.

[tattybogle in reply to Hidden]

I understand that TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies ) can be raised in both Hashimoto's and Graves .

I was referring to TRab (TSH receptor antibodies ) or TSI (thyroid stimulating immunoglobulin ) which are diagnostic for Graves.

[Hidden in reply to tattybogle]

Excellent questions but beyond me.

My GP said I was kicked into Graves so that is all I know.

As far as I understand, your antibodies (all of them) at this point are already activated by something (virus, mould, heavy metals, gluten, other food sensitivities ,toxins) as you know and to try and find the root cause. What I understand by "The Thyroid Secret" & "The Root Cause" by Isabel Wentz and a 9 episodes informational series & "The Thyroid Connection" by C. Myers said it is easy to go back and forth between Hashimotos and Graves.

I am not a doctor or claim to know much Tattybogle but what I would be concerned about is lowering your antibodies (any and all of them) with either Graves or Hashi. At least that is my focus and only a suggestion. I just didn't want to be in Graves so I lowered my medication with both the Levo and NDT.

[tattybogle in reply to Hidden]

How much NDT do you take ?

[Hidden in reply to tattybogle]

1/2 grain NDT and 25 Micrograms of Levo....

[tattybogle in reply to Hidden]

I'm not used to ndt ,so i cant tell if that equates to less or the same as 75mcg Levo.

In my experience High TPOab's went down on their own without me doing anything. But i agree, healthy diet and all that is a good idea.

I know it is possible to have confirmed Graves antibodies, and Hashimoto's, but it is very unusual, and i read lots of account's on here of folk being told by GP they 'have gone hyper' or even 'you've got Graves', when they haven't done the relevant tests to confirm.

GP's dont always seem to know that autoimmune Hypothyroidism can give fluctuating T4/T3 levels as thyroid tissue is destroyed and hormones are dumped into the bloodstream. This is not the same as Graves Disease where the thyroid is constantly producing too much T4/T3.

I have never heard of any case of Graves being 'caused' by taking too much thyroid hormone, that doesn't sound correct to me.

I'm not picking on you , just making sure information is accurate for others reading later.

[Hidden in reply to tattybogle]

I am not taking it as picking on me, I am just sharing my story and what I have read and heard. A functional medicine or naturalpath can help you with your questions. And great for you that your antibodies went down without doing anything.... lucky, lucky you! I am not so lucky. I still have not found my root cause.

[tattybogle in reply to Hidden]

Sorry , that wasn't meant to sound like i was gloating, i just meant that having very high, or nowadays much lower antibodies haven't made any difference to how i have felt over the years.

I'm currently the most 'non functional' i have been since diagnosis of autoimmune disease 17 yrs ago, with the lowest antibodies i've ever had.

So in my experience they are high at diagnosis and reduce slowly over years regardless of what you do.

But it's really interesting to see what happens to other peoples. We are all so different.

Most GP's never measure them more than once , so there is not enough information, which is a real shame because they need MORE information to understand autoimmune disease, and yet they don't look at what they could get easily.

Wishing you well in your search for better health

[Hidden in reply to tattybogle]

Oh Tattybogle... don't be silly... truly if your antibodies are low... I am happy for you as then your immune system is not attacking your thyroid... this is all a journey we are going through and not a fun one... and you are so right, we are all so different... all the best to you to with all

[Health4I in reply to tattybogle]

From my original readings, TPOAB was raised but not TGAB but I guess that could have changed over the last year?

[tattybogle in reply to Health4I]

Hi Health41,

I have put links to some good articles that explain (as much as is known anyway !)

about the antibodies in autoimmune thyroid disease.

But if you are like me it will take you 6 moths to understand it

It's interesting though.

thyroidpatients.ca/2020/04/...

thyroidpatients.ca/2020/04/...

thyroidpatients.ca/2020/05/...

Just out of interest , i too lose weight when over OR under medicated with Levo, but if i'm honest it's probably because i'm too exhausted to shop/cook/eat enough.

I think it's worth you checking with GP if you having unusual weight loss.

I also had a period of weight loss (looked anorexic) a couple of years before i was diagnosed with Autoimmune Hypothyroidism. I am sure this was a period of 'too much thyroid hormone in body' which is quite usual at the start of Hashimoto's,

although i don't think Hashi's is technically what i have, as i never had a goitre.

I've only ever had TPOab tested, which were over 3000 initially but 194 a decade later.

Still it's good you are feeling better than before and able to enjoy exercise again,

So hopefully it's all good and you can just enjoy being slim

Best wishes

Tat

[Health4I in reply to tattybogle]

Many thanks for this. Some good bedtime reading which is more likely to be possible than sleep at the moment whilst it is scorching!

[SlowDragon Administrator in reply to Hidden]

You can’t get Graves by being over medicated

You can get over medicated symptoms by taking too much replacement thyroid hormones but you can’t “get” Graves by taking too much levothyroxine

Graves’ disease is an entirely different thyroid disease

You can have Graves’ disease and Hashimoto’s at same time, though it’s rare. Usually treated with block and replace

Graves is ONLY confirmed by testing TSI or Trab antibodies

Some people find antibodies rise when taking NDT ...important to test antibodies before and after starting NDT

thyroidpharmacist.com/artic...

I always advise testing thyroid antibodies before and after starting new thyroid medications. For example, if someone starts feeling worse after initially feeling better on NDT or has an increase in thyroid peroxidase antibodies after starting NDT, switching to a compounded T4/T3 medication may be helpful.

[Health4I in reply to Hidden]

Yes, thanks. I have hashimotos too. That is interesting that at 75mg it was too high for you. I don't know much about Graves. What sort of symptoms did you have with Graves please? Yes, I think the GP does need a visit. I have always been someone who carried extra weight and so losing a significant amount of weight is not the norm for me. I am glad I have lost the weight but it doesn't appear to be stabilising so something is not quite right.

[Nanaedake]

I've noticed you haven't posted any results for thyroid antibodies in past posts. Have you assumed you have Hashimotos or were you told that by the doctor? Doctors usually call it autoimmune thyroiditis in which case there should either be blood tests to confirm antibodies or an ultrasound to show a diseased thyroid gland or both. If it were me, I would want to have a copy of the evidence for the diagnosis so I can be sure the diagnosis was made on a sound basis.

There can be a variety of reasons for a sluggish or slow functioning thyroud, some of which are temporary. So, I think you need to be clear about what thyroid condition you have been diagnosed with and on what evidence. The reason for that is because if your symptoms are assumed to be thyroid related and actually aren't then it might mean further investigations are not conducted and there could be another cause for weight loss or symptoms which is not identified.

If it were me, I'd be asking lots of questions, gathering the evidence and trying to keep an open mind.

If your glands were swollen, as you say in a previous post, but ultrasound did not show thyroid disease and you had no thyroid antibodies then you might have had an infection which can cause reduced thyroid function. Did the Dr check CPR or other inflammation markers as well as antibodies? Sorry, lots of questions but it's not clear from your previous posts what actually has been tested, how a diagnosis was arrived at and you haven't posted results either.

[Health4I in reply to Nanaedake]

Hi, I have just posted my original test results. I believe I have Hashimoto's and when I presented myself to the GP last year I had various blood tests not just for thyroid. I did have other inflamation markers to begin with as I presented myself at the GP being in extreme pain bone & muscles (legs). Txs.

[Nanaedake in reply to Health4I]

In response to the blood test results you have just posted above, you do have elevated TPO antibodies showing autoimmune thyroid disease relating to Hashimotos thyroiditis. The Vitamin D reading at 25 was extremely low and very deficient if this is a UK reading. Check the measurement unit is nmol. It likely explains bone and joint pain. Vit D deficiency seems to be connected to autoimmune thyroid disease and possibly even any thyroid condition.

Have you been supplementing and with what dose and have you had Vit D tested after supplementing and again recently?

Since you have Hashimotos thyroiditis your thyroid status can fluctuate and this could be the cause of weight loss.

One point though is that your TSH was not very elevated above the normal range and so correcting vit D deficiency may have brought it back into range so that you might have to reduce your thyroid medication. You'll only know when you have more blood tests.

If bringing vit D levels up and checking you are then on the correct dose of thyroid meds does not resolve the weight loss, then if it were me, I would feel it was worth ruling out other thyroid antibodies such as TSI and TRab due to the weight loss. It is possible to have both sets of antibodies I believe. So perhaps you need to rule it out?

Worth reading up on. There will be others on this forum who can discuss or explain more about autoimmune thyroid disease.

To check TRab and TSI antibodies you would need a referral to an endocrinologist because these tests are not done in primary care.

So discuss with GP but before you go to apt, identify a suitable endocrinologist who is a thyroid specialist, not a diabetic specialist. Thyroid UK have a list of specialists you can ask for.

[liaratsoni]

Hi, I don't know how it correlates with you being on levo but for me significant weight loss was a hypo symptom - I dropped roughly 20% of my body weight and looked like a skeleton as I was already slim - I am still trying to gain my weight back - I gain it back when my thyroid levels are good but I am having a hard time reaching my optimal dose due to cortisol issues. It appears to me cortisol also plays a role in my weight loss/prevents me from gaining back weight with hypothyroidism too.

[Health4I in reply to liaratsoni]

That's interesting because last year my cortisol tests came back abnormal but then when retested they were 'in range'. I probably need to learn alot more about it all as clearly health and tests change and don't stablise and I guess I am relatively new to the thyroid problems based on others comments online here.

[Liyaelize]

I am happy to see you asking this question as I experience the same. I dropped from 50 k g to 43 have a TSH of 3.3 and don't want to lose weight at all