My GP thinks I have hyperthyroidism and has referred me to an an endocrinologist. My bloods were only slightly out of range, but have been going up over the last few months. In the meantime she has prescribed me Carbimazole and propranolol and I have had blood tests today for all my thyroid function again, ESR, thyroid antibodies, B12 and calcium etc.
I have 2 questions - 1) in your experience - is it normal to start taking these before seeing a specialist? My worry is (from my Googling!),. that if the underlying cause isn’t autoimmune and more of a temporary thing then the drugs might make things worse? (Although this is probably unlikely to be temporary?).
She also wasn’t very clear in terms of long term outcomes. I guess I need more information from the endocrinologist, but 2) once the right treatment has been sorted for me, is it likely that the symptoms (anxiety, irritability, palpitations, eye issues etc)… will reduce?
Thank you in advance, it is amazing to be able to ask these questions.
A slightly worried newbie! x
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Yes it is usual for doctors to start carbimazole as soon a you appear hyper.
The question is *should* they? - If you become hyper to a more severe degree of your hyper is from a condition which cause continuous hyper (eg Graves) then being on carbimazole is best for you. If you turn out to have a thyroid condition which cause transient hyper and your thyroid levels naturally drop (eg Hashimoto’s) being on carbimazole isn’t right & you could quickly become hypothyroid
How can you find out? You need to test thyroid antibodies.
GPs can request TPOab & lab adds TGab if TPO positive. Only Specialists can request graves specific antibodies.
As it’s likely the referral won’t be through for weeks / months doctors treat as Graves as untreated Graves a concern. Becoming hypothyroid short term isn’t as dangerous. Although you may feel equally if not a worsening level of symptoms.
Retesting within 6 weeks of starting carbimazole extremely important to check level & adjust dose.
First obtain your results. Doctors often go by the TSH which a pituitary hormone that signals thyroid. It might be this is low and usually this mean thyroid hormone are high. You need to know how high what are the FT4 & FT3.
Arrange online access or obtain printout via reception. It must be a print out not verbal / hand written or typed - as you need lab ranges, which vary between labs.
How much carbimazole & propranolol have you been prescribed?
Do not stop propranolol abruptly, reduce slowly when stopping.
Thank you so much for you reply, it’s all really helpful. So hard to take it all in when the GP starts telling you everything when you’re new to it all.
So I had my bloods done a few months ago and she said my TFH was a bit low (not sure of concentration or ranges), but my T4 was normal - indicating subclinical hyperthyroidism.
These were repeated a few weeks ago and my TFH was low again, but this time my T4 and T3 were high. I don’t have access to my results, but I will register online for them. She said for T4, the cut off was 17.0 and mine was 21. For T3 the cut off was 6.5 and mine was 7.1. So only slightly raised? I have had my bloods done again today (haven’t started any medication), so will see what they come back with.
She also requested the thyroid antibodies, so hopefully I’ll have an answer early next week in relation to that. I will then start the medication, depending what they say.
I don’t have the quantities of my medication yet - as the prescription is with the pharmacy, but I will pick them up tomorrow.
In relation to my eyes.. it’s a bit non specific.. I’ve had them tested, GP has looked at them and had my ears and sinuses checked and all seem fine. My eyes are bit gritty, and watery. My left eye is more affected and has changed shape very slightly, only I can notice it! But it feels like there’s pressure behind it and am always putting drops in them, as they feel irritated and gritty. Which probably isn’t very helpful, but my left eye hasn’t felt right for a few months now.
Thank you so much for your reply, all really helpful xx
I had very similar elevated levels. I have a hyper nodule (not autoimmune). I had been hyper for a long time.
Graves tend to be much higher, eg 3x normal level isn’t uncommon.
If your dose is higher than 10mg per day (or 2x 5mg) I’d question if you need higher with the elevation you have.
I was given 20mg, by 8 weeks I was borderline hypo (my TSH has never risen) I should have been tested earlier but clinic sent me pre clinic blood test to then arrange an appointment but GPs reception wouldn’t let be book appointment as I hadn’t had appointment through yet.
Please see pennyannie advice re eyes. I’ve found care for eye issue can be extremely poor, more on my profile. Emphasis you have gritty eyes with eye pressure and especially change in appearance.
The right medication to bring your FT4 & FT3 into range will help your symptoms you mention.
If you do have positive Graves antibodies it’s a case of controlling high levels until the immune system stops over stimulating thyroid, this usually takes month / years, but remission is possible.
Doctors tend to suggest surgery / radioactive iodine treatment around 18 month mark, it standard procedure to permanently prevent hyper. Both treatments have high likelihood of inducing hypothyroidism. Medics view hypothyroidism easily treated.
If you are well on carbimazole many choose to stay on it long term.
I haven't taken my temp.. but always feel quite hot (don’t think I have a temperature). I’ve also noticed my resting heart rate is about 10 bpm higher than normal, but I thought this was more related to being a bit unfit at the moment!
I feel generally under the weather, tired, a bit flu like, but all underlying, my neck and glands feel swollen, as if I’ve got a cold or virus coming, but never actually appears! A bit dizzy and anxious, but I just put that down to my anxiety.
Sally, i am by no means an expert, but what i do know is your pulse / temp / blood pressure taken at key times of the day can tell you so much more than a single blood test. especially regarding whether or not you are truly hyper. relying on blood tests alone has actually lead people astray due to high adrenaline often found in hypo people which can mimic hyper symptoms. fast heart rate, sweating, insomnia, etc... and its worth checking if you are able to right now to make sure you get the right treatment. always worth having a second opinion
I was not prescribed Carbimazole until my blood tests had come back and the Graves antibodies identified by the Laboratory which took a couple of days but that was back in 2005.
I am fully aware of the current delays throughout the NHS system and since Graves is ' seen ' as life threatening if not medicated maybe the rules have changed.
I do think that many doctors readily prescribe a beta blocker, like Propranolol which is ok if your symptoms dictate - my symptoms were simple insomnia and yes, once on the Carbimazole my symptoms were alleviated, I was back at work, and felt more well than I'd felt in a good while.
What are these results that have come back " slightly over " a couple of times - do you have them there and can see a TSH, T3 and T4 reading and range ?
You could register for online access with your surgery as we are all now legally entitled to have free access to view our medical records.
Basically there are 2 auto immune conditions that target the thyroid - and quite why your immune system has decided to turn and attack your body is a whole other conversation.
With Graves and Hashimoto's initially the only way to tell them apart is by the positive and over range antibodies found in the blood test which is generally analysed from the very first blood test sample the Laboratory were sent.
Hashimoto's is transient ' hyper ' type symptoms and the T3 and T4 drop back down into range by themselves.
Whilst with Graves the T3 and T4 keep rising higher and higher and the Anti Thyroid needs to be prescribed to block your own daily new thyroid hormone production while we wait for your immune system response to calm down and your T3 and T4 increasing further.
TED - thyroid eye disease can be experienced with both the above AI diseases - just make sure anything you use on your eyes, drops, lotions, sprays. are all Preservative Free - even those prescribed by the NHS.
Thank you so much for all the information, it’s so helpful.
I am going to resister to get my results electronically. But I have a low TFH and high TF4 and 3. I have had my antibodies tested today, so I will get these back next week.
Could I ask a bit more about Graves? Have you found the symptoms to be controlled and what does it mean long term? It’s a bit scary thinking the body is ‘attacking’ itself, and not really knowing why. My Mum had Rheumatoid arthritis , so I understand a bit about these kind of illnesses. Is Graves something that you live with forever? Or does your immune system eventually ‘calm down’
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Well Hashimoto's resolves once there is no thyroid left to attack, and when totally disabled and non functioning which is when you will likely need full spectrum thyroid hormone.
With Graves there is no cure so it is for life and multi organ but it's all a question of the degree of the symptoms being tolerated.
Graves is generally only diagnosed when the thyroid becomes involved because the thyroid is such a major gland and can cause a multitude of symptoms, some life threatening.
Most people do well on an AT drug and the most recent research is suggesting that the longer the patient stays on the AT drug the better the outcome for the patient.
Which makes perfect sense as we are looking at an AI disease said to be triggered by stress and anxiety, so again you need to read up around Graves, if that is your diagnosis on the link already given in my first reply above, as it's too large a subject to cover in a couple of sentences.
I was given RAI thyroid ablation in 2005 and deeply regret this treatment option but told at my very first appointment Carbimazole was too dangerous to stay on long term and that I was to have RAI the following year - and I knew no better and told nothing negative about this treatment.
With Graves by having the thyroid removed it's a quick fix for the hospital especially RAI as it's just a drink or a tablet in nuclear medicine and you go home and isolate yourself.
The thyroid is the victim in all this and not the cause as the cause is one of your immune system having been triggered to turn and attack your body rather than defend it.
By having either a thyroidectomy or RAI thyroid ablation you remove the ability of the thyroid being further attacked and flip the patient from ' hyper ' to ' hypo ' which is seen as more easily treated by your doctor in primary care.
Primary hypothyroidism, in fact any form of hypothyroidism is not easily managed, nor a walk in the park, just taking one tablet a day, as many mainstream medics seem to think.
Currently the NHS regularly just offers 1 treatment option for hypothyroidism - and I like many others, in order to function at some level, need to self medicate and buy our own full spectrum thyroid hormone replacement in order to reclaim and restore our health and well being.
As your levels are only just above normal sounds more like autoimmune HYPOthyroid …..also called Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms as thyroid cells breakdown and release excess hormones…..before becoming increasingly hypothyroid
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
This is all so helpful - thank you. I am going to wait to see what my latest blood tests say before I start any medication and also wait to see the specialist - my appointment has come through for the 5th June so not too long to wait.
Thank you so much for taking the time to reply to me
I have an update and some blood test results, so I would like to pick you brains again please!
GP still thinks I have hyperthyroidism.. (I am still waiting for my specialist appointment!)… my latest results are below… I am abit confused about the TPO- is this related to Hashmitos or Graves, she said she couldn’t tell me and I have to wait to speak to the specialist. I have been on 30mg of Carbimazole for 2 weeks and I have also started B12 injections.
TSH - <0.02 (0.35-5.5)
T4 - 33 (7-17)
Thyroid peroxidase Ab Conc - 19.4 (<9.00)
B12 - 134 (150 - 900)
The only other tests that were out of range were liver function - ‘low calculated globulin - may represent antibody deficiency’ - is this in keeping with hyperthyroidism? Or potentially unrelated?
My GP said I am very hyper and need to get it under control - what is your opinion on this?
Should I be getting some follow up blood tests in the next few weeks? Are there any other antibody tests I should be requesting?
All very confusing, and also not helpful that I can’t see a specialist for another 4 weeks!
That’s helpful - so I’ve been referred to an endocrinologist, but they cancelled the last appointment, so I have a month to wait.
The GP phoned an endocrinologist to ask what dose I should be put on for anti thyroid and they said 30mg of it for now.
My FT3 was tested about a month ago (7.1 range 3.50-6.5), but I can’t see it on the last blood result for some reason. I’m presuming it’s gone up as my T4 had in a month.
Ferritin is in range but looks low to me (34: range - 15.00 to 300.00).
My diet is pretty good, not vegetarian, so likely more an absorption problem. I have 6 B12 injections over the next 2 weeks. Is this quite normal for hyperthyroidism, or likely to be something separate?
I am pre menopause, but potentially perimenopause, how does this affect things?
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Can I suggest you start a new post with the above question so all forum members will be able to help and advise you - rather than tagging it on the bottom end of what is considered an ' old and answered ' question/post.
We can always look back at your previous post to remind ourselves where you are in our thyroid journey.
Please add blood test readings and ranges from the original blood test when the AT drug was prescribed and current TSH, Free T3 and Free T3 readings/ranges and the blood test result and range for the for the Graves antibody reading.
OK - but it's the first question we need answered in order to help you better understand what is going on.
Looking back both B12 and ferritin needed supplementing 3 months ago :
Have you seen a specialist ophthalmologist regarding your one eye that appears slightly different to usual - are your eyes dry, gritty, and or watering - please ensure all eye preparations are Preservative Free
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