I am having thyroid investigations. I had noticed I have a goitre, I have seen GP and my first set of bloods for thyroid function were abnormal TSH- 16.56, T4- 9.4. They diagnosed sub clinical hypothyroidism. I went for an ultrasound that showed two thyroid nodules and a cyst on the left side and the radiographer said my thyroid wasn’t too enlarged but the GP said the report showed diffuse swelling. The nodules he felt looked ok but to air on side of caution I going for a FNA next week. My GP has referred me to endo and sent me for some repeat bloods which have come back as TSH 6.30, T4 9.3 and this time I had the TPO done which was abnormal 769.5. I haven’t spoke with GP yet as have a telephone appointment tomorrow.
My question is really what should I expect and what information should I go armed with. I’m a bit worried I won’t get the correct treatment or advice. The endocrine team also aren’t seeing anyone as yet due to Covid 19! Amazing! I can go to the flipping cinema soon but I can’t see a healthcare provider!
Any advice would be appreciated 😁
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Robski501
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I think your TSH is too high and should be 1 or lower and your T4 should be higher in the range. I think you need Levothyroxine but whether you get it depends on the doctor because the NHS won't treat until your TSH is 10. I also have a goiter and mine is a multinodular one so all the nodules are small and don't need to be biopsied.
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 10mIU/L on 2 separate occasions 3 months apart AND * Symptoms of Hypothyroidism "
I was given Levo with a TSH of 6.8 and in range T4 but with raised TPoab(Thyroid Peroxidase antibodies) AND long standing symptoms (at age 32)
This must be very worrying time for you - but the people on here are very knowledgeable - and kind
You are hypothyroid so will need to take levo (T4 meds) for the rest of your life. You also have Hashi's, which means that your thyroid will struggle and eventually fail, so your level of medication is likely to increase over time. But this is all VERY common - levo is the third most prescribed medication in the UK.
You will need regular blood testing - no point in re-testing antibodies again, they will jump about but never disappear and there's nothing you can do about them*. But you should have your free T3 tested - at the same time as free T4, and also key nutrients ferritin, folate, vit D and B12, as your thyroid meds will work best when these are nice and high.
As Lora7again says, the aim is to get your TSH down to less than 2, probably less than 1, and your free T4 and free T3 to the top third, or possbly the top quartile of the range for you to feel well.
* Some people find going gluten-free helps with Hashis - even if you're not coeliac - so may be worth a try
ALWAYS get your blood results, and the reference ranges, which vary from lab to lab whenever your thyroid bloods are taken - just saying "normal" or "in range" isn't anywhere near good enough - it's where you are in the range that matters.
And have a good rootle around the Thyroid UK site and helvella 's excellent glossary , pinned on the right, to get to grips with the jargon.
your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Your thyroid is being attacked and destroyed. Initially levels can vary a lot ...hence your TSH going up and down between the two tests
Guidelines say you should be started on levothyroxine if you have TSH over range, high antibodies and symptoms
With Hashimoto’s we frequently start cautiously on levothyroxine
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Even if we often don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Autoimmune thyroid disease is normally only managed by a GP. There are almost 2 million people in the UK on levothyroxine. It’s the second most prescribed medication
Read up as much as possible about the autoimmune aspect of Hashimoto’s.
I have had a couple of biopsies - they did not find anything in the first, and were surprised, so they did a second. They froze my neck with a spray which is instant and I did not feel a thing. All clear. So dont worry about the biopsy side of things. I hope you find a good endo and the supportive and helpful advice here is brilliant. Keep asking and the lovely people on here will keep helping.
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