I've been lurking here for a few weeks now and find your info so valuable! I'm 28 years old and live in the states. Four years ago, I was feeling very strange and unwell, so I went to see my GP. My mother has Hashimoto's (as do other family members), and she suggested that thyroid could be to blame for my symptoms. I was tested, and here were the results:
TSH: 2.48 (0.40 - 4.50)
FT4: 1.2 (0.8 - 1.8)
Thyroid Peroxidase Antibodies: 30 IU/ML (<9)
Thyroglobulin Antibodies: 4 IU/ML (<OR=1)
Vitamin B12: 442 PG/ML (200 - 1100)
The doctor then told me the antibodies "may indicate a propensity toward Hashimoto's", but since TSH and FT4 are normal, no evidence that I am too high or low on thyroid hormone; check again in 6 months. I did some research on my own and saw my B12 was low, so started supplementing, and felt better enough that I did not follow up with labs for the last few years.
Recently I've been feeling unwell again: fatigued, depressed, overwhelmed by daily tasks, thinning hair, irregular menstrual cycles and premenstrual spotting. And the most bothersome symptom, which led me to seek out a new GP, is a strange feeling of tension in my right cheek below my eye which comes and goes but is fairly constant and definitely bothersome.
The new GP is one I picked at random based on good reviews. GP examined me, and she said based on my history of antibodies and my family history of Hashimoto's, thyroid very well could be responsible. I came in prepared (thanks to this forum!) and asked for a full thyroid panel and testing of B12, folate, ferritin, and vit. D. She refused to retest antibodies as "once you have them you always will, so there is no point" and refused to test FT3 or the vitamins.
She did order a CBC, TSH, and FT4 and here are the results:
CBC: all within range
TSH: 3.78 (0.40-4.50)
FT4: 1.0 ng/dL (0.8 - 1.8)
Personally, I was encouraged by these results, as I believe the TSH is too high and FT4 should be higher, however, my GP said "good news--your labs are fine" and when I replied that based on my history of antibodies and rising TSH, I would like to have a full thyroid panel done and consider starting treatment, she replied that the recommendations are to not treat thyroid until TSH is above 5 (or even 10) and she would not order further thyroid testing or any of the vitamins I requested, as she does not believe my thyroid is responsible for my symptoms.
I wanted to ask for your insight. Is it reasonable to think my labs would warrant treatment? From my understanding, the antibodies will continue to attack my thyroid until I have even less function. Frustrating to think I'm meant to just continue to feel worse until I hit the threshold for treatment. Not sure what to do now.
Thanks!
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cam92
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You are slowly but steadily going into hypothyroidism for which you need treatment. Unfortunately doctors play the statistics game where they set a threshold for when they will treat based on poor guidance advice. You are not a statistic, you are an individual and should be treated as such. Symptoms should override biochemistry; some people will feel bad when TSH is 4 others not until 8 or more. Insist you are treated and diagnosed as an individual and not as a number.
Thank you for your reply! I totally agree. Hopefully I can find a doctor who will look at symptoms and the bigger picture, not just the reference ranges.
What happened about the vitamin D, folate and ferritin tests ?
Get these tested privately if Gp didn't do
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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thank you for all those references! I try to minimize gluten, but have never cut it out entirely. That will be difficult for sure, but worth a shot it looks like.
GP is now willing to testing my vitamin D, but will not test B12, folate, or ferritin. Her reasoning: "Since your complete blood counts (CBC) is normal, including the size and shape of your red blood cells, it is unlikely that your folate, B12, or ferritin is abnormal. So, I would not look into those further at this time. I don't think that these would be contributing to your symptoms."
Planning to try and find another GP or endo who will test, or order them independently.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
Increasing research says actually that diet, especially dairy and/or gluten have a lot to do with autoimmune thyroid disease (and many other autoimmune diseases)
The only way to know if that includes you is to try a gluten free diet (after ruling out coeliac disease first with coeliac blood test )
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
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
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
I just got an e-mail notice the other day from Quest Diagnostics that I can order blood work without a prescription from an MD. If you have Quest in your area, maybe order those test yourself.
Hi cam, Yes, Quests everywhere here (the US) they might tell you they need a doc's request for any blood tests. I get my private blood tests once a year as a full thyroid panel from True Health Labs, they are on the internet, you pay them, they send you a purchase order, then you go off to the nearest (usually) Quest lab to you. I was going to suggest that you get a complete thyroid panel via True Health Labs even just once a year so that you know exactly where you stand, and then you will know which doses improve your condition and which do not. Your doc may not have any enthusiasm for testing beyond TSH and T4 - basically they do not know what to do with the results.
Yeah, I saw Quest Direct only lets you order TSH, if I remember correctly. Great idea though, probably is worth it to pay to have the whole picture at least once a year. Thanks! I'll check out True Health Labs.
It is reasonable, yes. You are technically hypo. It's just that doctors are so poorly educated in thyroid that they don't know that. You are hypo when your TSH reaches 3 and in some countries would be treated at that level.
However, starting thyroid hormone replacement - levo or whatever - will not stop the destruction of your thyroid. It might slow it down, but the disease will continue its course. And, it's not the antibodies attacking the thyroid, anyway, it is the lymphocytes from the immune system that are doing the attacking. And, your doctor is right on that, there is no point in retesting antibodies. They will fluctuate but that doesn't mean that your Hashi's is improving or getting worse. It is just there.
Thanks for your reply and for clarifying about the antibodies! The main reason I wanted the antibodies retested was because they were only mildly elevated back in 2015. At the time, that GP said I had a "propensity" toward Hashimoto's, but without being retested to see their levels now, I am unsure whether I actually have Hashimoto's or not.
You do have Hashi's. Even with the antibodies just slightly over-range - even if they're just under the top of the range. And, if they came back lower in a second test, it wouldn't mean you didn't have it. Antibodies fluctuate all the time. GPs always say that about 'propensity' towards Hashi's because they don't actually know anything about it.
PLACES TO ORDER YOUR OWN TESTS–The first five are US-based.
I'm sure that if there are five labs doing tests directly for the public in the USA there must be others not included in the list, but you'd have to do your own research.
...
One thing to bear in mind regarding vitamin B12 is that the body needs folate in order to make the most of the vitamin B12 you have supplemented or are supplementing.
Methylfolate supplements are easily sourced on supplement websites and Amazon.
...
Please check if any of your supplements or medicines contain biotin. If they do you need to stop taking the product for a week before testing (as long as stopping won't cause you any danger to your health which would still be very awkward in terms of testing). In some cases it can interfere with testing and give very unreliable results.
Thorne.com has a self order thyroid test kit (in states). It being a “kit” that furnishes their evaluation of results it likely runs more. Also arrays of misc. test kits seem to be trending in larger stores now such as Target.
I have personally used Ulta Lab Tests (listed under the Stop the Thyroid Madness site). I found that during early opening hours & late afternoon hours this blood drawing lab was only staffed with one person! That phlebotomist even agreed with me that this was not safe. I live in California & this may be the case just in my area, as companies do not like our minimum wage one bit.
The blood might not lie, but it can certainly mislead, when it alone is used to diagnose hypothyroidism. ... For those of us who have thyroid hormone resistance, our blood could have a gallon of thyroid hormone in it and it would mean nothing, because we have a problem with the hormone being taken up by the thyroid receptor sites and taken into the cells where it has to reach to do it's work.
There is only 7 1/2 pages on thyroid hormones in the book I mentioned. Causes of high & low thyroid hormones are only listed for the most part. I have tried to look up some labs in this layperson’s reference such as vitamins & been disappointed. I saw it in a patient health library. It is a basic patient reference on labs designed not to be overwhelming.
Hi, just to help you in case, I saw a vitamin d specialist clinical research fellow for 30 years here in England. Vitamin d deficiency itself can make people feel very unwell even if thyroid is normal. Check vitamin d Council website, symptoms. I would get it checked private. Vitamin d is actually a hormone when you research the bio chemistry of it and how it's converted in the body so fatigue, bone problems etc can cause very unpleasant symptoms. In the North of England where I am quite a lot of people are given supplements. It's poorly understood by GPS here like thyroid, I'm being treated with levo and was dismissed for 6 years saying tests normal. Private gp has said it's a disgrace. I'm been very poorly and had no life so I pray I will begin to feel better when levo dose is right. I will always get my vitamin d levels checked as I was deficient also. Please don't take no for a answer and suffer, get all tests done to get to the bottom of your symptoms. Good luke from England 👍
Thank you I hope so too👍The best advice I would give is to go on vitamin d Council forum, it comes up on Google, the modulators have a lot of knowledge, and can advice you better than me. I started with 3,000 iu a day and had vitamin k2 rich food which is a Co factor and helps with absorbing as everyone is different. It took 3 months and my level was classed as acceptable. Some people take longer. The specialist Dr grimes, he worked at Blackburn hospital in England testing people for many years, if you Google him, he has a website, he did a lot of work with world specialist researchers and lectures, you can his lectures on you tube, he links to vitamin d Council on his website. It really helps you understand vitamin d when you read up on the site. GPS start people off with a loading dose here in England. You need to know how deficient you are. Sadly like thyroid GPS don't seem to have knowledge and say different things to patients. I thought vitamin d was why I had become so unwell, but its my thyroid but I still check vitamin d levels as it lead to similar symptoms and we need it also for good health. I did my homework and asked the vitamin d Council for advise. Kind regards and hope this advise helps you instead of trying to supplement yourself. 👍🙏🤗
Just a quick update--had vitamin D tested, and it came back flagged as low! My result was 21 (standard range: 30-100). Going to get started on maybe 4,000 IU a day. Thanks again for your help!
Glad you moving in right direction. My recent test was 100, that's after 2 years of starting supplements. 3 months starting date on 3000, got level to 125. Dropped to 1000 now. I take vit d all year 1000iu a day and it shows that is needed for me just to keep my level around that amount. Vitamin d Council forum helped me understand loading dose and continued dose but we are all different so get tested as nhs don't seem to want to do it to check regularly. I went private. 👍🙏
You can be iron-deficient without anaemia. My bloods were normal and I was basically told all my problems were perimenopause (the stock answer to everything from 35 onward!) I eventually found a gp with an interest in thyroid conditions who picked up my low ferritin (25) and started me on iron supplements. I had symptoms with a TSH of 2.7 which is well inside the "normal" range. I had carpal tunnel, joint pain, irregular cycles, palpitations, restless legs, episodes of extreme fatigue and sensitivity to cold. Now I'm getting treatment these have all rectified themselves. Unfortunately most doctors don't know and you'll just need to do a bit of research to find the right one. Ferritin is really important to get tested and if you can't get anyone to do it I'd recommend you get it done privately. Ferritin under 50 is associated with hair loss, over 70 with regrowth. Some doctors will say it's normal at much lower values so make sure you research and double-check what you're told. Several people saw my value of 25 before my current doctor said it was far too low. You need iron for synthesis and conversion of thyroid hormones. You really need to become your own expert and advocate I'm afraid!
That's very interesting, thank you! You're right, I think I'm going to have to do some serious research to find a GP who *gets it*. It's bizarre to me that my current one is so adamant about not running the tests I'm asking for. Seems they don't understand you don't have to be technically deficient to not feel well.
I should add that I'm taking thyroid meds in addition to the iron supplements but for optimal function you need iron, b12 and vit D to be at good levels.
I was only borderline but had antibodies so my GP started treatment straight away as he said it’s only going to get worse. I am usually now very low in range. In fact it’s often flagged as below range but they’ve never changed it and I am well.
I would go back and say you’ve been reading up and ask could you try a small dose to see if it makes you feel better?
I had not realised I was below par - blamed it on a busy life and getting older, but within a week I had more energy.
Yes, my thoughts exactly! Sounds like you lucked out with a good GP, and that gives me hope that you felt better after treatment. I get the feeling my GP is very by the book and has made it clear she won't treat me unless TSH is above 5.
But I really don't understand what the harm would be on starting on a low dose to see if I feel better when the TSH is at the lower end of the range? I also mentioned to her that I may be trying to conceive in the next few years, and right on the lab it states the reference ranges for pregnant women is 0.26-2.66. She didn't acknowledge this at all in her message to me. Think it's time to find a second opinion.
Having Hashimoto's it seems obvious this is only going to get worse, and it already has since the last time I was checked a few years back. It doesn't make sense to me why they just want me to wait for the inevitable.
I was lucky. He's retired now, but he also had a thyroid problem which probably helped!! He did like to go by the book too, but also had a dose of common sense, thankfully!!
I reckon it's definitely worth a trip back and asking. You might need to stress that you are not feeling right. I had tried to give blood and was anaemic which is what prompted my visit and subsequent treatment.
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