Advice for a new member please.: Hi all, I have... - Thyroid UK

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Advice for a new member please.

Tanzanite55 profile image
7 Replies

Hi all, I have been reading posts daily to try to understand how to read test results before my next hospital appointment with a consultant. I have a family history of thyroid problems. My mum had Graves and had her gland removed and my sister had Hashi and also had her gland removed. I have suspected I had a thyroid problem for many years and detected a goitre as long ago as 30 years ago or more. I was recently very ill and resulted in finally being investigated for thyroid problems

Last results are as follows

TSH 2.5 mu/L

TPO >1300kU/L

Free T3 6.7(3.5-6.5)

Free T4 14 (9-23)

Vitamin B12 347 (211-911)

Ferritin 26 (20-291)

Serum Folate 5.1 (3.4- )

250H Vitamin D <30 (51 - )

There were also another 15+ blood results all in range except the following 2 which were in bold

Gamma GT 59 (0-38)

MCH 26.2 (27.0-32.0)

Letter to GP as follows

XXX had presented to ourselves with a good going history fatigue over a number of years which has worsened recently. She has seen a number of clinicians privately who had previously identified the thyroid as a probable cause but have not found reason themselves to act upon it. My colleague xxxxx organised a fair few blood tests at her last appointment and they confirmed a sky highTPO reading of more than 1300. This is not a surprise given the extensive thyroid conditions in the family. The patient herself had a raised T3 at 6.7 with inappropriately normal TSH of 2.5. I am pleased to see dexamethasone suppression test was adequate suppression down to <30. The thyroid itself is goitrous and on recent ultrasound had increased vascularity. All in all this points to Hashimoto's thyroiditis and I have no doubt that her underlying symptomatology is due to her sky high TPO positive antibody and an element of subclinical hypothyroidism. The recent worsening most likely affair of this. I would also note that her vitamin D is quite low at <30 and this is only going to complicate the issue further. It needs replacement and I would be grateful if you would start this at 1,000 units of vitamin D3 analogue of your choice.

We will see her again in three months time to see if this thyroiditis flare is dying down. If she remains hyperthyroid a trial of ATD might not be a bad idea. If it has returned to normal for her, which I would hasten to add is subclinical hypothroidism given her persistently low borderline thyroid levels historically, then she may be a candidate for Levothyroxine trial. That will come in due course. We will arrange for these investigations in June.

I would be most grateful for your comments on the results and the letter. I am due another blood test followed by an appointment to discuss. The last visit and letter were with a registrar on rotation so will see someone different next time.

I have so far only been prescribed the vitamin D.

Sorry it is so long-winded

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Tanzanite55
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SlowDragon profile image
SlowDragonAdministrator

Changing to a gluten free diet may help. You could ask for coeliac test first, but it's notoriously unreliable and even if negative trying gluten free is still worth doing.

Hashimoto's upsets digestion, leading to leaky gut. Read all about it at The Thyroid Pharmacist website.

Also lots of info at Thyroid Uk, Amy Myers and Chris Kresser.

Vitamin D, we usually find we need a higher dose than 1000iu. (typically 5000iu but you'd have to buy your own) If you start on one GP gives you and get it retested privately after 6-8 weeks (GP probably won't be allowed to retest due to budget rules). If it's fallen further, change to higher dose. Testing via vitamindtest.org.uk - £28 postal test

Your ferritin needs improving too. Lots of posts on here about that.

Same applies to B12.

Only add one supplement at a time, to see how you react.

Tanzanite55 profile image
Tanzanite55 in reply to SlowDragon

Thank you for your comprehensive reply. What do you think of the actual results? I understand from previous posts that the TSH should be 1 or under whereas the medics in the UK use guidelines up to 5 or more. I'm not keen to take anything which may make me more hypo as suggested if my readings are similar next month. I have lots of hypo symptoms - extreme tiredness, gained 5 stones which I can't shift even when eating less than normal,dry and brittal hair, hair loss, itchy skin, dry cracked skin on feet, toes getting deformed ( does anyone else have toes that spread apart- especially the 2nd and 3rd toes?) brain fog, poor balance etc. I need loads of sleep and then when I get up, can concentrate fir a short while then need s nap before I can do any more.

Sorry to go on but when I told this to a private consultant, he suggested I needed to go on a duet and maybe I wasn't sleeping well and I should go to a sleep clinic as maybe I had sleep apnea. My sister who spent the night in the same room on holiday for 3 weeks confirmed that I was not constantly waking up and was sleeping well at night. I refused to waste the NHS resources and also refused blood pressure pills though I did ask to double up on diuretics as my swollen ankles are getting worse. I can lose up to 7lbs overnight

Clutter profile image
Clutter

Tanzanite55,

In the early days of Hashimoto's when lymphocytes infiltrate the thyroid gland cells are destroyed and dump hormone into the blood stream causing transient hyperthyroidism. This doesn't usually last for long because repeated infiltrations atrophy the thyroid which is then unable to produce sufficient hormone and Levothyroxine is required to replace the low hormone.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

The doctor has suggested that when you are seen again anti-thyroid drugs may be trialled if your T3 remains raised or Levothyroxine may be considered otherwise.

It is difficult to treat at this stage. T3 is mildly elevated but anti-thyroid drugs will make you hypothyroid. Treating you with Levothyroxine will raise your T3 higher. It's really a wait and watch situation until you either become more hyperthyroid or more hypothyroid.

Tanzanite55 profile image
Tanzanite55 in reply to Clutter

Thanks clutter, do you agree tgat I am hyperthyroid at the moment? Thought TSH should be under 1 or even suppressed?

Clutter profile image
Clutter in reply to Tanzanite55

Tanzanite55,

TSH is usually suppressed <0.1 when T3 is over range so I think you have what is known as T3 toxicosis or Hashitoxicosis which is a temporary type of hyperthyroidism.

TSH of patients not taking Levothyroxine is usually between 1-2.

Patients taking Levothyroxine usually need TSH 1.0 or lower with FT4 and FT3 in the upper range to feel well.

Tanzanite55 profile image
Tanzanite55

Many thanks. I am just trying to work out how to react next month when I go for results. I would not be happy to take any meds that make me any worse. I seem to be struggling to be prescribed T4 even with lots of symptoms

SlowDragon profile image
SlowDragonAdministrator in reply to Tanzanite55

Improving your very low vitamin D & ferritin should really help.

Also adopting a strictly gluten free diet.

Selenium supplements can also help.

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