Hashimoto's or just paranoia?: Hiya, I'm new here... - Thyroid UK

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Hashimoto's or just paranoia?

HJ1989 profile image
15 Replies

Hiya, I'm new here but thought it's probably the best place to ask this question! I get very lethargic in the winter with an increase in symptoms for my anxiety and depression. I've always thought it was SAD but I had a test done for my Vit D levels last year and they were too low. I did a lot of research and decided to test my thyroid as well. I paid for one of those at home kits so I'm not sure how accurate it was but the results were:

TSH - 5.39mIU/L

Free Thyroxine - 12.9 pmol/L

Free T3 - 4.0 pmol/L

The TSH was highlighted as an issue and I went to see my GP who said it wasn't 'really elevated' and were the other levels were normal it didn't suggest a thyroid issue. This was back in April this year. I just had a follow up blood test with the GP 2 weeks ago (to keep an eye on it) and got the results today.

My TSH came back at 4.28 with the other readings in the 'normal' levels (I'm sorry to say I was stupid and didn't ask what the other readings were). However they also ran a Thyroid Antibody test (I believe for the Peroxidase?) and I was told the optimal range is from 35-50 ... mine was 257.

Everything I've read on this suggests Hashimoto's but I'm not sure if I'm reading it properly (plus let's face it Google doesn't always give you the right answer!). I had a chat with the GP about it and talk about shutting me down. She wants to do another blood test in 6 months just for my general thyroid function but she said she won't test the antibodies again. I asked if the level of the antibodies increased every time whether that makes a difference and she said no and that she would just go by the other markers. I asked if this elevated level could be linked to my depression and anxiety, fatigue etc and she said no. I also asked if this could be linked with my Coeliacs Disease because I know that puts me more at risk for developing a thyroid disorder and she said it's actually a good thing and that my Coeliac's could have swayed the reading on this test. Is ANY of that true?! I know my body produces antibodies in line with my Coeliacs but I've had it for over 10 years and am on a very strict diet to control it - I just don't see how THOSE antibodies could sway the reading on this test?

All in all I am at a loss what to do next. I don't want to have something else added to my list of medical issues (I also suffer from Bile Acid Malabsorption and IBS) but I feel like this would REALLY make sense as to why I feel how I do at times. My depression is worse in the winter, I've actually just bought a light therapy box because I thought it was SAD (something else my GP didn't agree with so she put me on the pill to help control my mood swings) and I'm back to being super agitated and snappy. I don't know if Thyroid disorder symptoms are more prominent in the winter and like the title says I'm not sure if maybe I'm just being a bit paranoid but my GP said a LOT of things that didn't make sense and that are contradicted by Thyroid UK and other sites.

Any opinions on this matter would be greatly appreciated!

Thank you,

H

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HJ1989
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15 Replies
greygoose profile image
greygoose

Oh dear. Oh dear. Oh dear. You've got a really maveric, there! I don't think very much of what she said was true at all!

For a start, it doesn't matter by how much your TSH is over-range, if it is over-range, you are hypo. 'Not really elevated' is like being 'not really pregnant'. You are or you aren't. And, you are. Hypo, that is. Not pregnant - as far as I know. :) You are hypo with a TSH of 3, so you certainly are with a TSH of over 5.

Were both these blood draws done at the same time of day? If not, you can't compare them. TSH is highest early morning, and drops throughout the day. And after eating. So, best to have your test as early in the morning as you can - before 9 am - and fast over-night.

We need the ranges for the other results to be able to interpret them.

However they also ran a Thyroid Antibody test (I believe for the Peroxidase?) and I was told the optimal range is from 35-50 ... mine was 257.

That's not possible. An antibody range starts at zero. And I don't think that 50 is a common cutting off point. Best if you could get a print-out of your results so that you can check on that. It's your legal right to have one in the UK. But, in any case, 257 is over-range in every range I've seen. So, yes, you do have Hashi's. And, no, it has nothing to do with your Coeliac antibodies. Every autoimmune disease has its own antibodies. However, those with Hashi's often also have Coeliac. But it's very doubtful that your GP would know the first thing about Hashi's - they don't 'do' it in med school.

I've never heard of Bile Acid Malabsorption. How does that manifest itself? And how do you know you have it? Are you sure it's not just an invention of your GP to explain symptoms she doesn't understand? They do do that. IBS can be a hypo symptom.

And, I've never heard of women being put on the pill to control their mood swings! How do men manage? Mood swings is another hypo symptom.

Some people need more thyroid hormone in the winter - not something I've experienced myself, but a lot of people do. So, it wouldn't be at all surprising in symptoms were more promenant in the winter.

Paranoia is a hypo symptom!

So, what do you do next? Would your GP be willing to test again in a few months? If so, make sure the blood draw is early morning. And, see what comes up. If your TSH is high again, nag her narrow to get put on levo. No point in retesting the antibodies. Once you've had a positive test, that's it. You've got it and it doesn't go away. But, do ask her to test your nutrients: vit D, vit B12, folate and ferritin, because they could all be low. Or, you could change your doctor. :)

HJ1989 profile image
HJ1989 in reply togreygoose

Thank you so much for your reply and your advice. I went into the surgery today and was able to get a full print out of my results - not something I've ever thought to do before but I'm SO glad I did!

From what I can remember both tests were done at different times. My most recent test at the surgery was just after 11am and my at home test was done in the afternoon so perhaps not the fairest comparison. I'll be going back for another draw in 6 months so I'll make sure to request the earliest appointment.

On my at home test back in April the results were:

TSH - 5.39 mIU/L

Free thyroxine - 12.9 pmol/l

Free T3 - 4.0 pmol/L

My latest results from the 31st October:

Plasma TSH - 4.28 mu/L

Plasma free T4 - 9.3 pmol/L

Peroxidase antibody - 267 iu/mL

So the antibodies are higher than what the nurse told me and the reference range on the print out shows 0.0-50.0.

The one that catches my eye is the T4 result on the latest test. Is that one and the same as Free Thyroxine? The GP didn't get my T3 measured as far as I can tell so I'm not sure if that would be any different but if the T4 is lower now than it was 6 months ago does that suggest anything? I guess I'm kind of looking for more pieces to the puzzle so if I go back the GP can't just fob me off.

Haha the Bile Acid Malabsorption is really good fun! Basically bile produced when you eat doesn't get absorbed back into the system meaning you have an overflow in your gut which causes all manner of digestive issues. I think I had it for about 10 years until I had the diagnosis in July last year! My previous GP just kept telling me it was IBS, allergies, intolerances. You name it, they said I had it - anything to avoid a referral fee. In the end I used my works healthcare and went to see a specialist; cut past the trial diet, investigations, blood tests and a trial of the medication and I had the diagnosis within 6 weeks. In fact the specialist I saw said he thinks the majority of people diagnosed with 'IBS' could actually be suffering with BAM. I think that's why I'm so concerned about these latest results. I've suffered first hand just 'going through the system' and I really really don't want that to happen again. As much as I don't want something else to add to my bow of illnesses it's that catch 22 of actually wanting an answer that's more than "it's depression/SAD/anxiety/it's the weather/exercise more" etc.

My GP has confirmed a follow up blood test in 6 months so do you think it's safe to wait until then? I'm not sure how quickly things could go downhill with this, if they will at all!

Thank you so much again for your comments, can't tell you how much I appreciate it!

greygoose profile image
greygoose in reply toHJ1989

They will go downhill because you do have Hashi's, and you are hypo. But it will probably be very slowly. I don't think you're in any immediate danger. But, without the ranges, it's not easy to tell quite how low your Frees are. I'm guessing the bottom of the FT3 range is 3.1? If so, your result is too low, but doesn't threaten your life.

However, the trouble with Hashi's is that it doesn't go downhill in a straight line. It zigzags, and levels can go up, rather than down - although the general direction is down. Unfortunately, doctor have no understanding of that, and you could even get diagnosed with hyperthyroidism, if you test at the wrong time! If that should happen, just remind them that you have Hashi's, and it's not real hyper, just pretend! :)

shaws profile image
shawsAdministrator

Change your doctor and I am afraid most of the 'professionals' follow rigidly their 'out of date' regulations.

Believe it or not, people from 1892 were diagnosed upon their clinical symptoms alone and given NDT (natural dessicated thyroid hormones) if they felt much better then their lives were saved and were hypothyroid. Before that they just died an awful death.

We have to read, learn and ask questions to educate ourselves and once diagnosed, the TSH is not really pertitent, it is the FT4 and FT3 which should be the indicators. (rarely tested).

However you are hypothyroid with a TSH of 5.39. The problem is that doctors have been told to wait until the TSH reaches 10 in the UK, which is horrific the unnecessary suffering it causes.

Even if you take the following to your GP she will be afraid of losing her livelihood (never mind about the patient's).

thyroiduk.org.uk/tuk/testin...

healthunlocked.com/thyroidu....

Tell her you will have no option, ticking of your symptoms below, but to self-source your own thyroid hormone replacements.

thyroiduk.org.uk/tuk/about_...

HJ1989 profile image
HJ1989 in reply toshaws

Thank you so much for this. That letter template is great! I had to do something like this for another condition previously so it's definitely something I can and will look to do again. I find it crazy that they wait until the measurement reaches 10. I was trying to explain to my partner last night imagine someone saying "I know you feel rubbish but we're going to wait until you feel much much worse before we do anything about it". I don't agree with that and I refuse to do it. I didn't realise self-sourcing treatment was an option. Is it quite costly do you know and/or difficult to do?

shaws profile image
shawsAdministrator in reply toHJ1989

I haven't sourced levo myself but if you put up a new post with the question, members will respond by Private Message, as no information is permitted on the forum. The main aim is relief of our clinical symptoms. If you email Dionne at TUK and request a copy of Dr Toft's Pulse Online article. He is one of the top doctors and highlight the part which states that if antibodies are present we should be prescribed. Email below:

tukadmin@thyroiduk.org

silverfox7 profile image
silverfox7

When I was in Levoi often increased my dose in the winter with my doctors blessing-he also was hypothyroid

HJ1989 profile image
HJ1989 in reply tosilverfox7

Thank you, I think from what I've learned so far it does make sense that my symptoms are worse in the winter months. The summer comes around and I feel better; not perfect but it's easy to forgot how bad you felt when you feel good again!

Hashi-hacker profile image
Hashi-hacker

If you have one auto-immune condition you are more likely to have another as you say. Supporting your gut health for coeliac related symptoms should help you with Hashimoto's (which it seems like you have from the anti-body test being above range) symptoms too. Are you taking thyroid replacement hormones?

HJ1989 profile image
HJ1989 in reply toHashi-hacker

Thank you for your reply! No I'm not taking any medication at all. This is off the back of my latest blood test with the GP. I found I was low on Vit D at Christmas last year (during one of my "woe is me" periods) so I decided to test my thyroid as well as few months later. I took them into my GP as my TSH was high and she said she would do a follow up test which was done at the end of October. Due to the antibodies being so high plus how I feel in myself generally I wasn't sure whether to push for a further review with the doctors or just get a 2nd opinion elsewhere!

Tina_Maria profile image
Tina_Maria

Your symptoms and your results do fit with Hashimotos. And like others have mentioned, there is a connection between coeliac disease and Hashimotos.

You have also mentioned that you had low Vitamin D status - are you taking any supplements? I think you will struggle to feel better unless your thyroid problems are being addressed, but similarly, your Vitamin D level needs to be optimal - especially as people with coeliac disease can have malabsorption problems, which puts you at further risk of nutrient deficiencies.

There is also a link between depression and low Vitamin D status, there has been a recent meta-analysis looking at this:

ncbi.nlm.nih.gov/pmc/articl...

I hope that you will feel better soon!

HJ1989 profile image
HJ1989 in reply toTina_Maria

Thank you so much, that article was actually what led me to test my vitamin D levels last year. I always go through a bout of severe depression in the winter months and my GP always wants to stick me on tablets that just make me feel worse so last year I wanted to try something more natural. The results came back that I was moderately deficient in vitamin D so I started taking a supplement which seemed to help somewhat. I stopped taking it over the summer and started it again about a week ago which I think is helping. I should have started taking it sooner really! Also testing out a light therapy box ... anything to brighten the day! :)

Tina_Maria profile image
Tina_Maria in reply toHJ1989

Glad to hear that you are feeling better. I believe it is actually recommended to start Vit D supplementation from October to March (especially in the UK) as the sun is too low in the sky to produce Vitamin D in the skin. :-)

hjh88 profile image
hjh88

It sounds like you could maybe do to try a different doctor at your surgery. I was diagnosed hypothyroid (it is hashimotos but no diagnosis of this I presume because of general ignorance) with number similar to yours. In fact, my antibodies were far lower than yours are.

I eventually saw a sympathetic GP who agreed to medicate me. To paraphrase, she suggested that having antibodies is only going to go one way - certainly not better. So why not medicate as the risks of starting on a low dose are minimal.

In all, I saw 4 GPs before the one that medicated me so I would urge you to see if you can find someone else at the practice who may be more clued up.

Best of luck!

Gaga2008 profile image
Gaga2008

Can you possibly go to a functional medicine Dr and an endocrinologist? I really believe both will give you a better answer on what you are facing. I'm in the U.S. so I'm guessing they'll be called the same lol.

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