My partner (21F) is trying to get a diagnosis and help about a possible hypothyroid because her family has a history of Hasimoto.
She gets very tired, suffers from really bad brain fog and other symptoms of a thyroid condition such as thinning hair, irregular and very heavy periods too. She has had symptoms for almost 2 years now and it’s been getting quite worse for some months now.
In January 2020 she decided try a Medichecks blood test to see if thyroid could be the culprit, these are the results:
TSH 12.2 (Range; 0.27 - 4.2)
FT4 14.7 (R; 12 -22)
TPO 415 (R; <34)
She then went for NHS to see if there was medicine for her. These are the results:
February - TSH 7.40 (Range; 0.38 - 5.33)
TF4 9 (R; 5.6 - 21.0)
May - TSH 4.83 (R; 0.38 - 5.33)
June - TSH 4.44 (R; 0.38 - 5.33)
The doctor checked her throat and said there is a possible goiter, but that the results suggested she doesn’t need medicine. Doctor also said she might have depression or anxiety issues.
I really do not think she has depression because she says she has motivation she just doesn’t have energy and but she tries to do some exercise everyday. We also eat a quite healthy diet and take vitamin D every other day.
Thanks for reading this and I would really help if someone could give their opinion on what to do.
Written by
ChimkenNuggers1
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You can only compare test results when they're done under the exact same conditions each time.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Also, testing thyroid antibodies is important.
In the UK Primary Hypothyroidism is diagnosed when TSH reaches 10, rarely when it's over range but below 10.
If TSH is over range, but hasn't reached 10, and thyroid antibodies are raised, then an enlightened doctor may diagnose autoimmune thyroid disease (known to patients as Hashimoto's) and prescribe Levothyroxine.
The Medichecks results showed raised antibodies with an over range TSH:
TSH 12.2 (Range; 0.27 - 4.2)
TPO 415 (R; <34)
These results confirmed Hashimoto's.
Hashimoto's is where the thyroid is attacked and gradually destroyed.
Presumably her GP wouldn't accept these private tests so he retested.
Fluctuations in symptoms and test results are common with Hashi's and this is possibly why her TSH was lower, and possibly because the test wasn't done first thing in the morning.
She needs an NHS test which shows an over range TSH with raised antibodies so your GP needs to do another thyroid function test and include Thyroid Peroxidase antibodies. However, the GP has already mentioned a possible goitre, another indication of Hashi's, and a thyroid ultrasound scan can be arranged and this will also show Hashi's.
So really, her mission now is to get retested and hope that her TSH is raised, antibodies are raised, and maybe arrange an ultrasound.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
Doctor also said she might have depression or anxiety issues.
Don't let the doctor take her down this route. Hypothyroidism can cause these issues so she must not accept any medication her GP may offer for depression/anxiety. Her problem is very obvious from her Medichecks results and I would be asking the GP why he wont accept them, explain that they are done by an accredited lab, the same accreditation that is used for NHS labs.
Yes all tests are taken early around 9am and without eating about 12 hours before. The doctor is very dismissive of the TPO shown from medichecks, and says only TSH will determine. I dont think the doctor will change their mind.
The doctor is very dismissive of the TPO shown from medichecks, and says only TSH will determine.
The doctor is wrong, he needs educating in thyroid disease.
Show him the article by Dr Toft, past president of the British Thyroid Association and leading endocrinologist, who states in Pulse Magazine (the magazine for doctors):
Question 2:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in two or three months in case the abormality represents a resolving thyroiditisis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to be come worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSh of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient's normal TSH concentration.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor. If no joy then I'd suggest finding another doctor, one who does actually have a little knowledge about thyroid disease.
I am not medically qualified but had undiagnosed hypothyroidism, and it was not the professionals who diagnosed me - I did so myself thanks to thyroiduk.org.uk.
In the UK, doctors are told not to diagnose until the TSH reaches 10
The TSH fluctuates throughout the day. It is highest early a.m.
Unfortunately, in the UK instead of doctors knowing symptoms and prescribing due to them, they have been told not to prescribe until the TSH reaches 10. They ignore clinical symptoms altogether and they also know none.
Did she get the very earliest appointment for the blood draw, and it should be fasting (you can drink water) in order to get the highest TSH. TSH (thyroid stimulating hormone) is all doctors diagnose by whilst ignoring low T4 or low T3.
When doctor checked her throat it could have been a swollen thyroid gland but unfortunately doctors have been told not to diagnose until the TSH reaches 10.
Hello Chimken ,i have put a link to NHS guidelines for you.
Because the TSH is reducing and is now in range, a GP won't consider Hypothyroidism, or offer treatment at the moment.
However, the history of 12 then 7 suggest's thyroid has been struggling to produce enough T4/T3 hormone, and is now producing more again. (but probably not enough to feel well, as a 'healthy' TSH result would be much lower in most people ie. under 2)
(Think of TSH-signal and FT4/FT3-hormones as being on opposite ends of a see-saw, as hormones lower signal rises, when more hormones produced signal lowers)
The raising to 12 and lowering to 4ish of her TSH could be explained by the raised antibody result- TPOab Thyroid Peroxidase antibodies 415 [normal less than 34]
These are quite/very high. This shows an increased probability of developing overt autoimmune thyroid disease in future ie. over-range TSH AND under-range FT4/FT3
Many people would say that your partner is already Hypothyroid , and the raised TPO ab's show that Autoimmune disease is already there ,causing up and down levels of FT4/FT3.
( the antibodies don't cause it- they come along to help 'clean up' afterwards and levels of antibodies go up and down.)
Other illnesses can cause temporary upsets in thyroid blood tests, but with high TPOab's it's most likely to be Hashimoto's, or some other variant of Autoimmune thyroid disease.
You should keep going to GP until you get 2 x over-range TSH's within 3 months , with symptoms . NHS guidelines say GP can then offer a trial of Levothyroxine.
Keep a record of the high Antibody and TSH results that you already have, they may help your case later on.
All the rest of the latest guidelines about treating subclinical hypo, and every thing else are in here too.
PAGE 13.
"TREATING SUBCLINICAL HYPOTHYROIDISM
1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical
hypothyroidism who have:
• a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions
3 months apart, and
• symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the
level remains raised, adjust the dose. If symptoms persist when serum TSH is within
the reference range, consider stopping levothyroxine and follow the recommendations
on monitoring untreated subclinical hypothyroidism and monitoring after stopping
treatment."
Hope this is helpful
Best Wishes
Tat
Ps tell her to keep declining the antidepressant's . I've been there too, and you are correct about the difference between depression and motivation. Emphasise to GP the effect on daily functioning, and avoid talking about feeling's.
That’s very helpful Thanks. Do you think the high antibodies attack the thryoid so much it goes from hypo to hyper or would this only be in extreme cases with much higher TSH?
1) Antibodies don't actually do the attacking, they 'label' the damaged thyroid protein after it end's up in the blood, so that it can be cleaned up.
2) HYPERthyroidism is not relevant to your partners situation.
A very LOW TSH (near 0) and VERY VERY High FT4/FT3 would be truly 'HYPERthyroid'
This is usually GRAVES disease, which is different. and dangerously high hormone levels need to be reduced with antithyroid drugs or surgery .
3) Autoimmune HYPOthyroidism (sometimes called Hashimoto's or Ord's) can often start with a so called 'hyper phase'. or 'hashi's swing ', but this is not true hyperthyroidism. What happens is the immune system mistakes the thyroid for an invader and attacks a bit of it, when that bit dies, it 'dumps' loads of hormones [T4/T3] into the bloodstream, so temporarily you have too many but they go away on their own as they get used up or are made inactive. Afterwards , you have LESS thyroid tissue remaining to make hormones, so you become a bit more HYPO. This is then repeated over years until presumably it's all dead, (but nobody checks , so you wont know when /if that ever happens)
This is why Autoimmune Hypothyroid patient's results go up and down, and why doctors are often confused.
It takes ages for all this stuff to make sense when you first start reading, i've been playing 'thyroid snakes and ladders' for 17 yrs and i still don't understand everything, and often cant explain my own results. Also the answers to 'why' and 'how ' are often still unknown to science. Most GP's get about an hour on 'the thyroid' at medical school so it's no wonder they get confused
EDIT; p.s. again
TSH naturally lowers throughout the day, so tell partner to always get future blood tests at 8/9am, (even if they have to wait ages to get an appt at that time) and dont eat drink breakfast other than water, until after test. You want Highest possible TSH to get NHS diagnosis of subclinical hypothyroidism, in order to be offered a trial of Levothyroxine.
Also look at other answers on this forum about optimising vitamins/ minerals and gluten intolerance in hashimoto's.
Thanks again for helpful answers! she had a chat with the doctor this evening to discuss this months test and it was a different one and he said he would FINALLY check TPO levels! Woo and if they are as high like medichecks he would refer to endocrinologist.
There are almost 2 million people in UK on levothyroxine.
90% of primary hypothyroidism is caused by autoimmune thyroid disease (hashimoto’s- has goitre or Ord’s thyroiditis - thyroid shrinks and shrivels up )
Almost all autoimmune thyroid patients are managed by GP
So this seems to be another ill informed GP
About 10-20% of Hashimoto’s patients have trouble getting dose fine tuned and need to see an endocrinologist
But the vast majority, are prescribed and managed by GP
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12, especially with Hashimoto’s
Important to regularly retest vitamin levels and frequently necessary to supplement to maintain OPTIMAL vitamin levels
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
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
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
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.
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