I’ve been newly diagnosed on Friday with an overactive thyroid. I have been prescribed beta blockers until I can see a specialist. But I’ve spent the whole bank holiday reading up on this and have totally overwhelmed myself. Especially as it seems that drs aren’t always getting it right which I find quite scary. If I post my results below, would someone please tell me in very basic language what my results mean please? Am I very much overactive or just slightly? I’ve had weight loss but only half a stone max and it seems to be going back on (+1lb a day) even before I have started taking any medication? Terrified of massive weight gain if I start taking medications and either that makes me gain weight or if I go hypo that makes me gain weight. Thank you very much in advance. I’m finding myself all consumed with this diagnosis as I’m 44 and never had anything wrong before this.
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Ladywiththebaby
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You are considerably hyperthyroid. I notice your doctor has requested TSI and fT3 (good idea) but you don't have these results? Sometimes the lab doesn't do these tests even if the doctor requests them, this is very annoying but not the doctor's fault.
There can be a number of reasons for hyperthyroidism. One of them is Graves' disease and the TSI tests for this.
Your doctor is right to prescribe a beta blocker. What one have they prescribed? The usual one for hyperthyroidism is propranolol because it can also reduce fT3 levels a bit. The thyroid produces mostly T4 which is converted to T3. T3 is the active hormone.
You should get an appointment to see an endocrinologist soon, if there is a delay of e.g. more than a month you could consider asking your GP to speak to an endocrinologist to see if you could be put on some carbimazole in the meantime. Carbimazole reduces the hormone secretion from the thyroid.
Hyperthyroidism causes anxiety, a consequence of the high hormone levels and rapid heartbeat. So, as well as genuine concern you can suffer from extra anxiety as a consequence of the excess hormones. It's worth bearing this in mind, that some of your worries may be due to direct action of the hormone on the brain.
When TSH (thyroid stimulating hormone) is low / below range, it often means thyroid hormones are high.
The TSH is a pituitary hormone which signal thyroid. So low means, the signal is saying reduce there enough hormone.
TSH can be unreliable so it’s important to test FT4 & the active thyroid hormone FT3.
The lab has noted - FT3 and TSI added. Which is the active thyroid hormone(FT3) & TSI is a hyper Graves antibody, but I don’t see the results added.
FT3 & TSI antibodies aren’t often tested in primary care.
Your specialist will need to test and also establish the cause of hyper.
Usually it’s due to autoimmune, 1 attacks thyroid. The damage causes thyroid cell to release hormones stores but ultimately the thyroid function becomes lower (this is called autoimmune thyroiditis or Hashimoto’s)
The other form caused continuous hyper from stimulating the thyroid called Graves.
Have you been given propranolol? or another beta blocker. What dose?
You might need to take an antithyroid medication, your FT4 are very high - the most common antithyroid is carbimazole.
Carbimazole reduces they new hormone from being produced and lowers thyroid levels. This should not cause weight gain unless you are given too much & you become hypothyroid for a long time.
We are also told we are accustomed to larger appetite and this is a cause of weight gain, but I lost weight when taking carbimazole.
but carbimazole must be carefully & appropriately adjusted.
Usually you being a higher starting dose & it is reduced.
Your Coeliac test shows you do not have a gluten allergy, but this does not show a gluten intolerance which is common with thyroid issues. Must be strictly gluten free if trialed. Any trace will cause issue.
Also important to test Folate, ferritin, B12 & vitamin d. Often low with thyroid issues.
Thanks both - really useful. I just went back on my app and there is a result for the T3 now. Will post below. What does that mean please? Obviously I can see it’s very high but what does that mean? Thank you.
Your fT3 is very high indeed. T3 is the active hormone that controls your metabolism and other functions. It will cause a rapid pulse, sweating, weight loss and anxiety.
Your fT3 is very high. I would contact your doctor and check if they have seen this result. I'd also ask them to contact an endocrinologist urgently to discuss your care, whether they should prescribe something more or give you an urgent referral. I'm not a doctor but I think your levels are high enough to deserve quick action.
Those are very high. FT4 Is 4.5x normal range & FT3 is Especially high at over 8x.
2 x 10mg is also an extremely low dose of propranolol. Dr could increase this.
As a example I had borderline FT4 just over range and FT3 was nearly 2x. I have hyper which isn’t autoimmune.
The GP referred me to a specialist & at the same time contacted the department to get guidance on what level of carbimazole to start me on - 20mg & also 3 x 40mg propranolol.
Only having elevated levels I didn’t need a high dose of carbimazole. At the first appointment the dose was halved. And propanolol stopped. but propranolol should be reduced slowly. I had to go back on it for migraine prevention & still take 30 mg now.
We do hear of appointments taking many weeks. Mine took over 2 months back in 2018. although that was because the specialist clinic sent me a blood test to arrange via practice, but the receptionist said there was no point having test until appointment through. But they were waiting for results. Once they realised it was finally arranged.
Definitely go back to doctor and point out how severe you level & symptoms are.
Fantastic advice. Ladywiththebaby you may feel well at the moment but it pays to get on top of it quickly. If TSH is very surpressed for a long time it can fail to recover which makes future thyroid medication more difficult.
I would definitely agree with that, the longer you are hyper then more likely your TSH will stop reflecting level as expected. This can be temporary or long term.
I later discover I’d had elevated levels for at least 4 years before being treated. They weren’t very high fortunately, but enough to suppress TSH. I still have an undetectable TSH.
Gosh thanks all. It’s very strange because I really don’t fell unwell! Weight loss has now stopped, haven’t had a migraine for over a month, heart isn’t hugely faster (I saw in my record that the last time my pulse was recorded was 2003 when it was 84, and now it’s between that and just over 100 every now and again), although this morning I am for the first time in a while feeling a bit shaky inside this morning and had a frequently disturbed nights sleep which I haven’t had for weeks. I always used to put the shaky feeling down to low blood sugar and needing to eat something! How odd that my levels are so high but I seem to be fine?
I'm glad to see you posted on here (I was messaging you on FB)
Really good advice above, as I said you'd get! You said you'd felt 'all consumed' with the worry of it all. That's a hyper symptom in itself - worry and anxiety. You think you feel fine, but you do have several hyper symptoms. We all encounter different symptoms, probably not all of them!
Ask your GP to push for that endo appointment. Levels that high need looking at quickly so treatment can start. And ask the GP to do as many antibody tests as s/he can beforehand.
Thank you TaraJR. I called the drs this morning and was told by the receptionist that the TSI result would be coming back so that’s good news. Will be quite relieved to know exactly what is causing this as currently have too many things going round in my head. So yes I guess that’s a symptom in itself! Will also be relieved to know when the specialist appointment is.
Or could it still be Hashimotos where there is a temporary overactive period and then it reverses and goes under active? Would that explain why I’m now putting the weight back on as quickly as I lost it?
Thank you. Ok that’s what I thought it probably meant but then got all confused again as was reading that it is possible to have both Graves and Hashimtos!
No joy on the specialist yet. I think they are all on holiday as I’m literally getting nowhere with any of them calling me back! However I have had a letter today - presumably from an NHS specialist saying to expect an appointment in the next 6-8 weeks and with a prescription for the Carb something medication!
But I’m really not sure about taking medication when I haven’t spoken to a dr yet?!
Hello there, I was diagnosed with graves July 2018 but had had symptoms for almost a year before.I didn't go to GP because I thought it was the menopause.My GP put me on 10mg propranonol 3x per day and referred me to endo.I got my appointment for September ( I telephoned and said I would take a cancellation)so it was almost a 3 month wait.My numbers were around the same as yours.I am in England and with the NHS.Wishing you all the best.
The prescription you mention will be carbimazole.That is medication to slow your thyroid down and reduce production of new T4.That is the medication I was put on by my endo.40mg a day.By 9th October my FT 4 was down to 23.8 and by Dec it had gone too low at 9.It worked quickly for me so you need regular blood tests every 6-8 weeks to check you are not on too much and have to reduce your dose.If you do take the medication while you are waiting for endo appointment to come through read the patient info leaflet carefully, especially if you get a sore throat or feel unwell contact your GP as it may not suit you.I was OK on it by the way.
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