Hi all. I'm new on thyroid UK. Been reading some posts but this is my first one.
I'm 50 and diagnosed in March with hypothyroidism (confirmed antibodies in May). Started on 75 Levo, then tsh went down so Levo reduced, then it went up again so levo put back up, then this week put up again to 100.
Like lots of you on here I'm starting to get really fed up with the lack of time and knowledge from gp's around thyroid issues. In less than 12 months my health has deteriorated rapidly with every symptom going related to hypothyroidism.
I asked for the readings from this week's blood results and TSH is 14.63 (0.30-4.20) and T4 is 9.7 (9.0-19.00)
I was shocked at my TSH as doctor on phone yesterday described it as slightly raised. But over 14 seems very high???
Last time they did the full works (t3 etc) and I'm still waiting for a copy of those results
Please can someone comment on the above latest tsh and t4 results.
Many thanks in advance. Apologies for my somewhat stilted post. Feeling very foggy headed!
Thanks xxx
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Lulu_65
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A patient optimally medicated on Levothyroxine will have TSH 1.0 or lower with FT4 in the upper quadrant of range. TSH >10 is overtly hypothyroid. Many hypothyroid patients will not have TSH >10 at diagnosis let alone when they are taking Levothyroxine.
Hashimoto's typically causes fluctuations in thyroid levels in the early days. As lymphocytes infiltrate the thyroid gland cells are destroyed and as they die off hormone is dumped into the blood stream. Sometimes FT3 will be very high (thyrotoxicosis) and this will drive down TSH. Eventually the cell loss atrophies the thyroid gland until it is incapable of producing hormone and the patient becomes entirely dependent on Levothyroxine.
100% gluten-free diet may improve Hashi symptoms and reduce antibodies.
For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.
It takes 7-10 days for a dose increase to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose.
You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.
Most people will find symptoms resolve after their TSH drops to around 1.0 with FT4 in the upper range but symptoms can lag a couple of months behind good biochemistry.
Hashimoto's and hypothyroid patients often have low or deficient ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Ask your GP to test and post the results and ranges in a new question for comment.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Lulu_65 Hi and welcome. Good grief! A TSH of 14.63 (0.30-4.20) is 'slightly raised'. Where does this GP live? In Telly Tubby land? Yet another one for the idiot pile, it's growing!
A treated hypo patient should generally have a TSH of 1 or under, or wherever is necessary for the FT4 and FT3 to be in the upper part of their ranges.
You need an increase in your Levo and quick.
As you have confirmed antibodies, did they bother to tell you that you have autoimmun thyroiditis, aka Hashimoto's disease? Hashi's isn't treated, it's the resulting hypothyroidism that's treated. To reduce the antibody attacks you need a low TSH, a gluten free diet (some people need to be dairy free also), and supplement with selenium.
And here's some information you might like to share with your GP as he seems to need a bit more education on the thyroid.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
If you email louise.warvill@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP.
It will be interesting to see your FT3 result when you get it.
My doctor didn't bother telling me I have hashimoto. They told me about the antibodies and I found out what that meant by reading on here. When I asked the doctor they very reluctantly agreed that 'well yes I suppose that does mean you have hashimoto but you definitely don't need gluten free as not coeliac' (words to that effect).
Furthermore they have not kept records of all my blood tests. I've had 4 since 19th February and the only ones they can provide me with are the most recent ones I had done this week. I'm not happy. I have an appointment with the nurse next Tuesday to have vitamin b12 tested as they forgot to do that one, and I'm going to ask her to look at my records.
So exhausted and at a time when I so need my wits about me.
Do you know what Lulu_65 , I don't believe your surgery has not kept records of your previous tests. All records are electronic now, they are on the computer and can be accessed with the press of a button. It's not a piece of paper they can mislay. I remember seeing on the nurse's computer screen a graph of my TSH results a while ago. And if I ask for a print out of test results they can be done instantly and in my hand within a minute.
I'm not surprised at your doctor's lack of knowledge about gluten free reducing antibody attacks. It has nothing to do with coeliac disease, gluten contains gliadin which is a protein and it's this that triggers the antibody attacks.
When you see the nurse next week, ask her about all your thyroid tests. If she says they not there then ask for the lab to send them through again! Ask for a print out or write them down yourself (with reference ranges). And while you're there ask for Vit D, ferritin and folate to be tested along with the B12. You could very well be low in all of those vits and mins and if they're not optimal (not just in range but optimal) the thyroid hormone can't work properly.
I agree re the tests. I'd requested them by email and was sent this weeks with a few old results tagged on the end dating back to march but no previous tsh results. Nothing pre March 31st and said there was nothing on record this year for earlier. I know my first blood test diagnosing hypothyroidism was done on 19th February and I've had 3 since then. So either they've deleted them or the girl in the practice office doesn't know how to find them on the system. I'll get the nurse to look for them when Im sat in the room with her next week. And I'll be asking for folate and vitamin d along with the v12 (have had ferritin results posted in new thread)
Thanks susie for all the good infotmation and advice
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