Undiagnosed Hypothyroidism: I've been... - Thyroid UK

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Undiagnosed Hypothyroidism

gelatin profile image
7 Replies

I've been experiencing hypothyroid symptoms for a couple of years now. My TSH has been steadily creeping up, but so far has remained in the "normal" range when checked in my local surgery, around 3.4. I had some private tests done and my TSH was shown as 4.4 (June) and 5.9 (August). My second test also showed free T4 at 17.5 pmol/L and free T3 at 3.3 pmol/L. I'm thinking maybe I'm not converting T4 to T3 efficiently. My antibodies came back negative.

Has any of you been diagnosed with hypothyroidism with similar lab results? I keep getting fobbed off by my GPs but I know there's something wrong and I want to do something about it before its tool late.

To complicate things, I'm also menopausal and I know there's an overlap between thyroid symptoms and menopause symptoms. Many of my menopause symptoms have improved on HRT, so I'm thinking the ones that didn't could be thyroid related, such as:

- sensitivity to both hot and cold temperatures (I get really cold hands and feet even if the temperature drops just a little bit, but I can also easily get overheated, so problem with temperature control and circulation.

- widely fluctuating blood pressure - it can be as low as 106/66 one day and then a few days/weeks later as high as 170/100. I doesn't fluctuate on a daily basis but there are definitely random periods when it gets high for a while before settling down again. I'm on Ramipril 2.5 mg but I don't think it does anything to prevent the periodic highs. I don't know what causes these highs? Stress definitely can be a factor, but sometimes I'm totally stress-free and still have these episodes.

- tinnitus, which is more intense during the high blood pressure periods, but still happens when my blood pressure is low/normal.

- digestive issues/sluggish guts - chronic constipation despite a relatively good diet. The constipation even led me to develop SIBO last year. I can avoid the SIBO symptoms (stomach gurgling, excessive gas) by taking laxatives every other day to get things moving. Not ideal, but that's the only thing that works. Without using laxatives, I would have developed major bowel issues by now, I'm sure. This has been going on over a year now. Interestingly, my constipation improved temporarily when I started HRT, but now it's back to how it was before.

- eye floaters with flashes of light in my peripheral vision in dark conditions (possible PVD) - I had this checked out twice and they couldn't find anything - my vision is fine. Sometimes when I close my eyes I can see all sorts of patterns move around - it's very weird - could be a neurological problem?

As of late, I've also got oedema in my left leg - despite walking 5-6 miles almost every day. I've read somewhere that could also be a hypothyroid symptom.

Apart from these worrying symptoms, I've also had some negative blood test results that my GPs don't seem to be concerned about: abnormally high B12 levels (which could be attributed to either over supplementation or malabsorption), high MCH/MCV levels which could indicate macrocytic anemia (large blood cells) due to folate/B12 deficiency, high morning cortisol levels (632 nmol/L), rising LDL cholesterol despite a fibre-rich diet.

I also had blood sugar issues (frequent blood sugar crashes following blood sugar spikes) but these seem to have improved on HRT. I no longer have these crashes. I also used to feel nauseous after eating, but I no longer do.

I'm a healthy weight and most of the time I have plenty of energy to exercise daily (I walk a lot) - but sometimes when I overdo it, my energy levels crash and I have to lie down for a bit. It takes me a couple of hours to recover but then I perk up again. This makes me think adrenal issues, perhaps? I literally run out of energy.

Sorry for the long post - you can see why GPs don't have time to listen to us and I can't convince them that I am hypothyroid. Does anyone recognise these symptoms as hypothyroidism? Are there any supplements you would recommend that could help me? I'm already taking methylated form of vitamins and Q10, magnesium, pro-biotics, fish-oil with extra vitamin D and collagen. What else can I take that's available OTC?

Thanks for reading if you got this far!

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gelatin
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7 Replies
SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Essential to also test vitamin D, folate, B12 and ferritin

Low vitamin levels common when hypothyroid

Low vitamin levels tend to lower TSH

SIBO suggests low stomach acid

Low stomach acid results in poor nutrient absorption

Improving vitamin levels can help improve symptoms too

Exactly what vitamin supplements are you taking

Please add any recent results and ranges

Suggest you get FULL Thyroid and vitamin testing via Blue Horizon as includes cortisol test

Or if you have recent vitamin results already

Just look at getting saliva cortisol and DHEA test via Regenerus

regeneruslabs.com/products/...

portal-app.inspira-regeneru...

Thyroid and vitamin testing

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

you say negative thyroid antibodies

Have you tested BOTH TPO and TG antibodies

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator

I had some private tests done and my TSH was shown as 4.4 (June) and 5.9 (August)

TSH shows your thyroid is definitely struggling

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

gelatin profile image
gelatin in reply toSlowDragon

Thanks I'll print out that second document to show my GP - oh yeah, I forgot to mention my low heart rate - sometimes under 50 - which is probably why my blood pressure is high - in order to circulate the blood! I've been complaining about these symptoms for years, it's criminal, really that don't take me seriously! Especially that I have a family history of thyroid problems through my dad. Thanks for your reply.

SlowDragon profile image
SlowDragonAdministrator in reply togelatin

If both antibodies are negative suggest you get ultrasound scan of thyroid

Ideally via GP but privately if not -£100 approximately

thyroiduk.org/testing/other...

gelatin profile image
gelatin in reply toSlowDragon

Thanks, I'll look into that.

humanbean profile image
humanbean

abnormally high B12 levels (which could be attributed to either over supplementation or malabsorption)

How high are your B12 levels (including the range)? And what have you been supplementing that contains B12? And what kind of B12 was it?

High B12 is not dangerous at all, but if it isn't working for you then you might have been taking the wrong kind of B12 supplement. A lot of multivitamins, for example, contain cyanocobalamin which is cheap and needs converting within the body to become active. Not everyone can do the conversion very well. A better supplement is methylcobalamin, which is already active and doesn't need conversion to become usable in the body.

For B12 to be processed by the body people also need sufficient folate. A common one to be found in multivitamins is folic acid. But folic acid is another form of supplement that needs conversion that can't always be done well by some people. It's a very common genetic issue.

A better form of folate is methylfolate. It is active and doesn't need to be converted before it is useful to the body.

Some useful links...

The Importance of Vitamins and Vitamins in Thyroid Disease :

thyroiduk.org/role-of-vitam...

Active forms of B vitamins should always be preferred to the inactive...

jigsawhealth.com/blogs/news...

Info on the different forms of B12 supplement available...

perniciousanemia.org/b12/fo...

Optimal levels (for serum) B12 tests...

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/le...

On the basis that most reference ranges for vitamins are too low I would say that the optimal level for Active B12 is 100 pmol/L but opinions on this do vary.

Difference between Serum and Active B12 tests explained :

web.archive.org/web/2015042...

Info on folate and folic acid :

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

pnas.org/doi/full/10.1073/p...

healthunlocked.com/thyroidu...

...

Tinnitus has often been blamed on low B12. Improving active B12 may help some people with tinnitus. Sadly it doesn't work for everyone, but its always worth a try.

gelatin profile image
gelatin in reply tohumanbean

Thanks for your reply, I really appreciate it. I've only just found it 3 weeks later, so I apologise for my late acknowledgment. My B12 levels were 1085 ng/l (normal being 771) and the active B12 measured a couple of months later by a different provider was >150 pmol/l, but didn't specify the exact value (perhaps it was as high as they would measure). Different providers, so different units of measurement, it seems.

I also have gut issues (dysbiosis/SIBO) and I know the gut bacteria can mess with your B12 levels. Since then I've received my DNA results as well, which show that I have problems with my FUT2 (Fucosyltransferase 2) gene expressions. I haven't investigated this line of enquiry yet, but it's interesting that it would come up - it tells me I do have B12 issues to consider despite seemingly having an excess of this vitamin. My guess is that my cells can't metabolise B12 and it's just circulating in my blood. I'm also positive for the MTHFR genes, which proves that I'm a poor methylator, so I've started taking methylated vitamins. However, I've also heard that people with gut issues have to be careful with oral supplements, so I'll see if I can find some transdermal or sublingual formulations.

I'll follow up on the links you sent me. Thank you.

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