Help to solve my thyroid mystery! : Dear all, I... - Thyroid UK

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Help to solve my thyroid mystery!

Anxiousjojo profile image
13 Replies

Dear all,

I would greatly appreciate advice on my current thyroid health mystery, which is making me feel miserable.

I have the following symptoms: fatigue, chills, sensitive to cold, horizontal ridges in my nails, hair thinning, heart palpitations and terrible anxiety and depression (for which I am taking venlafaxine). I don't have any weight gain, if anything I am underweight.

My GP has been monitoring blood tests but said its my choice whether to start medication for subclinical hypothyroidism. I'm not sure what to do or what is causing the hypothyroidism and strange blood test results (period in June last year where tsh was normal).

Here is my history of blood results:

February 2023

Serum TSH 5.5 (0.2-4)

Serum thyroid peroxidase antibody concentration 42 kU/L (0-60)

Serum free T4 level 13.3 pmol/L (11-22.6)

Serum ferritin 20mg/ml (10-291)

Vitamin D 64.2 nmol/L

Serum folate level 10.3 ng/ml (3-14.4)

Serum B12 level 448 ng/ml (211-911)

Haemotocrit 0.335 (0.36-0.46)

Serum adjusted calcium concentration 2.11mmol/L (2.2-2.6)

June 2022

Serum TSH 2.5 miu/L (0.2-4)

January 2022

Serum TSH 5.3 miu/L (0.2-4)

Serum thyroid peroxidase antibody concentration 30 KU/L

Serum T4 12.1 pmol/L (11-22.6)

October 2021

Serum TSH 5.7 miu/L (0.2-4)

Serum thyroid peroxidase antibody concentration 28 KU/L (0-60)

Serum T4 14.2 pmol/L (11-22.6.)

It took me quite a long time to write these results out haha. Anyway, my GP is not very knowledgable and dismissive about this. Having read posts on this forum, I would greatly appreciate anyone who has the time to give their opinion on what I should do.

Many thanks,

Jo

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Anxiousjojo
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13 Replies
humanbean profile image
humanbean

horizontal ridges in my nails

Some possibilities. Warning - some of the pictures are rather gross because it covers lots of different problems with nails, not just horizontal ridges.

dermnetnz.org/topics/nail-t...

greygoose profile image
greygoose

Only you can decide if you want to take thyroid hormone replacement, but given all your symptoms, if it were me, I'd take it.

Your TSH level last June was not 'normal'. It was in the so-called 'normal' range, yes, but the range doesn't tell you everything. A euthyroid (i.e. without any sort of thyroid problem) TSH is around 1, never over 2, and you are hypo when it gets to 3. A TSH of 2.5 tells you that your thyroid was struggling at that point.

But, were all these tests done at the same time of day? Because TSH varies throughout the day: highest around midnight, drops through the morning to its lowest around midday, then starts to rise again. We, on here, always suggest that the most practical time to have the blood draw is just before 9 am. But, even so, the TSH level can vary from test to test because there are so many variables that can affect it. It's not the greatest indicator of thyroid status. More importan is the FT3, and they don't even test that. But your FT4 never reaches mid-range, so it is much too low.

When you are hypo, you are very likely to have low stomach acid, so absorbing nutrients from food is often difficult. Your ferritin is much too low - your doctor should be doing a full iron panel - your vit D too low, and your vit B12 lower than I would want mine. These low nutrient levels will be contributing to your symptoms. Raising your thyroid hormone levels could raise your stomach acid and thereby your nutrient levels. But you will probably need to supplement - for a while, at least. The body cannot use thyroid hormones unless the nutrient levels are optimal.

There's no mystery: you are hypo. We don't know why you are hypo, there could be many, many reasons. Your antibody levels are negative, suggesting that it's not autoimmune. But, the problem there is that there are two types of antibodies that should be tested, and the NHS only tests one of them. The other one - Tg antibodies - could be high telling you that it is autoimmune. Also, a certain percentage of AIT sufferers never have high antibodies, so in this case, you cannot prove a negative!

But, whatever the cause of hypothyroidism, there's only one treatment: Thyroid Hormone Replacement. And, the sooner one is started on it, the better the outcome, usually.

Anxiousjojo profile image
Anxiousjojo in reply togreygoose

Thank you so much, I agree that I should start the medication. I just wanted to get some opinions because some articles say not to medicate subclinical. Do you suggest starting on low dose of levothyroxine?

greygoose profile image
greygoose in reply toAnxiousjojo

I expect those articles were written - or inspired - by doctors, because they hate diagnosing and treating hypo, and come up with any excuse not to do it!

With any hormones, always start low and increase slowly. The starting dose of levo is usually 50 mcg, and is increased by 25 mcg every six to either weeks, after retesting levels. That's as fast as you can go, but you can go slower, if you feel the need. :)

SlowDragon profile image
SlowDragonAdministrator

Low vitamin levels are directly linked to being hypothyroid as we tend to develop low stomach acid

Your ferritin in particular is deficient

Are you vegetarian or vegan?

What vitamin supplements are you currently taking

Request GP do full iron panel test for anaemia

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary 

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

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

SlowDragon profile image
SlowDragonAdministrator

Majority of hypothyroid patients gain weight, but a significant minority can struggle to maintain weight

You need coeliac blood test too

There are two antibodies linked to autoimmune thyroid disease (hashimoto’s) …..TPO and TG antibodies

NHS only tests TG antibodies if TPO are positive

Significant minority of Hashimoto’s patients only have high TG antibodies

You will need to test privately

Anxiousjojo profile image
Anxiousjojo in reply toSlowDragon

I am not vegan or vegetarian but I don't eat much red meat. Where would you recommend getting private testing?

SlowDragon profile image
SlowDragonAdministrator in reply toAnxiousjojo

all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks thyroid including antibodies £65

medichecks.com/products/thy...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon thyroid including antibodies £89

bluehorizonbloodtests.co.uk...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Just Thyroid includes BOTH TPO and TG antibodies -£49

randoxhealth.com/at-home/Th...

Never supplement iron without getting GP to do full iron panel test for anaemia first and retest 3-4 times a year

It’s possible to have low ferritin but high iron 

Alternatively

Medichecks iron panel test - test early morning and don’t eat between getting up and blood test

medichecks.com/products/iro...

Both Medichecks and Blue Horizon offer private blood draw at clinic near you …..for extra fee

medichecks.com/pages/clinic...

SlowDragon profile image
SlowDragonAdministrator in reply toAnxiousjojo

Anxiety and depression can be linked to being anaemic

parsleyhealth.com/blog/8-ca...

Buddy195 profile image
Buddy195Administrator

If your GP is unable to complete all thyroid tests (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), or key vitamins and antibodies, you could look to do this privately, as many forum members do, for a better picture of your thyroid health: thyroiduk.org/help-and-supp...

arTistapple profile image
arTistapple

I wish I had been given the choice of whether to start thyroid treatment when I reported dreadful angina symptoms 25 years ago, with a heart attack following five years later. I recently found a blood test from cardiology showing I was subclinical at that time. Nothing was mentioned. Subclinical, twenty years on is still not a straightforward diagnosis because our ‘workaday’ medics just do not seem to be properly trained/educated about the thyroid. It’s wonderful they know in theory that heart problems arise from hypothyroidism and equally terrifying that they choose to ignore the evidence - particularly when the patient is manifesting symptoms. What is going on? They do not properly listen. They are dismissive. They are in too much of a hurry. They are uneducated. They depend on naff TSH blood tests when they should be looking at actual thyroid hormone results. As long as they stick to manufactured protocols (created by equally ignorant endocrinologists) they are protected under the law, even if they are actually doing ‘wrong’ to the patient.

Starting thyroid treatment is no picnic, especially (maybe) if you are left for many years without a proper diagnosis and treatment. It’s a common enough story on this forum. You will get good advice here on the forum. However in the end the decisions are yours to make. If I had known I was subclinically hypothyroid I could have more closely monitored myself, instead of thinking for years that I was a hypochondriac, suffering a heart attack, giving up my work etc etc etc. The decision could have been mine; instead of taking mountains of heart medications, treatment for depression, treatment for stomach problems - oh dear, I am spitting feathers this morning.

Anxiousjojo profile image
Anxiousjojo in reply toarTistapple

So sorry that happened to you. Are you currently having treatment? What are side effects like? Xx

arTistapple profile image
arTistapple

No true side effects as such. BUT from time to time magnification of old symptoms of hypothyroidism. Honestly the best result has been the almost disappearance of the angina. Instead of getting 3 or 4 very painful episodes per day, I might have had 3 or 4 episodes in the two years since commencing treatment! I now realise so many of my symptoms are clearly related to hypothyroidism. No guidance from GP or Cardiologist. I made a bit of a mess recently trying to sort it all out. Mainly an experiment with T3. It had rather a profound effect. Both brilliant and awful. I think I took too much but with all things thyroid, it’s difficult to come to a balance or sweet spot as it is often referred to. I can’t pretend it has been easy but some of it may be due to having no diagnosis for a very long time.

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