I had bloods done and gp diagnosed me with hyperthyroidism. I posted a few days ago and was told to get a print out of my results to get some advice. I have attached the photos of my results. Waiting on a specialist appointment. Turns out my grandmother, great grandmother, aunt on my mom's side and uncle on my.dads have thyroid issues, the main one being Graves disease. Any advice or info anyone has would be really helpful, my gp didn't go into much detail.
Thanks
Alicia 😊
Just to say that you absolutely need the antibodies tested, as was said in your last post.
Your levels are high, but they don't really look high enough to be Grave's, more like Hashi's high. You need to know which you have because the treatment is different, and, as endos often don't seem to know the difference, they could start you on the wrong treatment. If you have Hashi's, the levels will come down by themselves, you don't need anti-thyroid drugs. But, you will then go hypo, and need thyroid hormone replacement. Everything hangs on those antibodies. 
Thank you. I am still waiting on a specialist appointment for more bloods. My Dr mentioned Graves, never heard of Hashi's. I've had the symptoms for about 4 years but just thought it was stress.... Thank you for your help 😊
Yes, well, as soon as they see a suppressed TSH, they automatically think of Grave's. But, it isn't always Grave's. So, you have to be careful.
Sorry for more questions but what is the tsh? Thank you for your help
Many of the abbreviations used on this forum can be found in my Abbreviations and Acronyms document (and I updated it just the other day):
dropbox.com/s/og3lmxa1dqadb...
TSH - Thyroid Stimulating Hormone.
Thyroid Stimulating Hormone - yours is 0.01, which is suppressed. A TSH in a healthy person would be around 1.
It's a hormone secreted by the pituitary to stimulate the thyroid to make more thyroid hormone. When the pituitary senses there is enough thyroid hormone circulating in the blood, it reduces its output of TSH. If it senses that there is too much, then it stops production almost altogether. That is why doctors use it to diagnose thyroid problems. If you were hypo, you would have a very high TSH.
Don't apologise for asking questions. That's the way we learn, and if I can answer them, I always will.
My liver function test came back saying make an appointment with your Dr. My results were:
Serum ALT level 37 u/l (0-35)
Serum gamma GT level 62 u/l(0-45)
Would this be related?
Thanks 😊
It could be, but I really don't know. Sorry. Can't answer that question! lol
That's ok, thank you 👍😊
You're welcome.
Graves can cause raised liver enzymes. ncbi.nlm.nih.gov/m/pubmed/1...
As greygoose said you need TRab or TSI abs tested to confirm Graves. However although your thyroid hormones aren’t that high, they are at the level mine were when I was diagnosed with Graves so it could be. I also have three close relatives with Graves but no hashis (to my knowledge) in the family. Endo thought that was a lot of close relatives with Graves when I spoke with him.
Thank you! I was wondering what I'd done to my liver. My mom hasn't got it but with me that makes 4 generations on my mom's side that have thyroid issues and 3 with graves. What is the treatment like for it?
Depends! Usually first line treatment is carbimazole which is a fairly hefty drug which can have serious side effects. It’s a thyroid hormone inhibiter. Usually you are on it for 12-18 months and the hope is it pushes the Graves into remission. Some people do well on it others really don’t. Some relapse after coming off it straight away, some are in remission for years. I was only on it a few months and was then taken off it and am in remission. That it unusual I gather.
Some people are put on just carbi, some are on block and replace which us where you are put on a much higher dose of carbi and then your thyroid hormones are replaced by levo. Which you are put on seems to be preference of endo.
Some people stay on carbi long term.
If carbi doesn’t work, they sometimes try a drug called PTU but I believe it can cause serious liver problems so it isn’t the drug of choice unless you can’t tolerate carbi it are pregnant.
Again if carbi doesn’t work then the options are radioactive iodine treatment to destroy all or part of the thyroid. This is not recommended if you have thyroid eye disease. Or thyroidectomy. Both RAI and thyroidectomy are likely to make you hypothyroid and all the issues that comes with potentially plus taking thyroid replacement hormone for life.
Excitingly a vaccine for Graves is being worked on. Look up Project Daviad. It’s a long way off but it does provide some hope of a cure! Maybe.
Thank you so much, it was really helpful. I have had a pain in my arm for about 4 months and it's got worse and now I struggle to use my are and I'm losing grip. I have am x-ray scheduled but I wondered if that could be related too? I have pulled a muscle before, it's feel like its in my bone. I haven't fallen, or knocked it. Thank you again😊
Are you having Graves type symptoms and how long have you had them? If a long time then if I were you and having this pain I might be concerned about osteoporosis (being hyper fior a long time can cause this). I am sure there are lots of possible causes though and if you haven’t had a fall or your arm then it’s probably not that. Sounds like GP is on the case with an x ray as a starting point but make sure you keep going back until they have done everything to check it out andcrule out all possible causes including osteoporosis.
Graves also causes muscle wasting and weakness so could possibly be related that?. Equally if you actually have hashis and not graves, an underactive thyroid can cause muscle pain, stiffness, RSI etc which can manifest in the arms.
These are guesses of course as there are lots of things it could be, including unrelated issues like a trapped nerve.
Thank you for your reply. I've had symptoms for a while, around 5-9 years... it's hard as I put lots of things down to stress. We have had a lot of family illness, and loss. However when things got better the symptoms never went away. They have got.worse over the last 12 months. My gp seems to think I have graves from what she said. Anxiety, exhaustion, itchy tingly hands and feet, weight loss, always hungry, ibs symptoms, hair loss , mood swings, insomnia amongst other things. Thank you for your help.
That’s a long time! Definitely make sure they check you for osteoporosis.
Having said that your symptoms sound mixed. Weight loss and anxiety could be hyper. Other key symptoms of hyperthyroidism are racing heart/severe palpitations, hot flushes and tremor. Have you had any of those? You do feel tired but also have energy at he same time. You feel “wired”. Diarrhoea is common and light or no periods. I was starving constantly! When hyper I can’t get to sleep, wake often and wake early.
With hypothyroidism you tend to get weight gain, constipation, hair loss, depression and anxiety, pins and needles. When I’m hypo I can’t get to sleep but stay asleep for hours once I am although it affects people differently of course the hypo insomnia feels very different to when hyper.
Full lists of symptoms are on Thyroid UK website.
They could also be symptoms of low b12 and folate (or other vitamin deficiencies) . You might want to go over to the PA forum on HU to get further advice on testing as you are having some low b12 symptoms (tingly hands and feet and fatigue in particular). Don’t supplement b vitamins before you get further advice.
Def get vitamin D and ferritin checked.
Remember there could be a few things going on. People who are hypo (ie if you are having a hashis flare now and it’s not Graves) tend to be low in vitamins due to low stomach acid.
It's not so much a tremor but I can't keep still. My leg bounces, or my fingers and moving and twitching. Im in bed now and my legs 're shakng/bouncing. I get really dizzy, nauseous and have headaches. Im.exhuasted all day, and can't do concentrate on one thing. Now I am wired and can't sleep which is the same story every night.
I am going to talk things through with the specialist when I see him. Im.alwsys starving, but also thirsty. I always seem to have so much wrong with me, I always feel rough..... I thought it was normal. I also didn't want to admit there was anything wrong, I had to be strong for everyone else.
Thank you for sharing, and all your help.
These symptoms (probably including the problems you describe with your arms) could all be down to being hyper. This article may help:
thyroiduk.org.uk/tuk/about_...
I've never felt so ill or had so many scary symptoms as I had during the first few months of having Graves'. No surprise really, as being hyperthyroid makes many of the systems in the body run fast. The good news is, the symptoms resolve with treatment, some of them quite quickly.
My thyroid levels were a bit higher - both FT3 and FT4 were double the reference range - but not by a huge amount. It's not unusual for people who've had Graves' confirmed with antibody tests to have thyroid results around this level, and they are certainly high enough to make you feel pretty awful.
Did you have your antibodies tested MiniMum97 ? - for both Graves' and Hashi's ?
My gp never mentioned antibodies.... she did say that the specialist would take more blood. I have had some of the symptoms for years but it has got a lot worse over the past 6 months. Im exhausted but can't rest, I am so anxious all the time, I must be awful to live with. It's the pain that is getting me down. I can't use my left arm because the pain is so bad. I take some.comfort in knowing I'm not alone, and tbat ita not all in my head!
I hope you are feeling better. Thank you for your help.
Alicia 😊
I have tested positive for Graves antibodies (TSI) but was diagnosed with hypothyroidism about 8 months before getting Graves symptoms. Was feeling hypo for many months before my hypo diagnosis. Am now in remission from Graves and back on levo.
I have however never tested positive for hashis antibodies. I must have been tested about 20+ times now. I keep considering getting a private thyroid ultrasound to definitively confirm it either way as it’s highly likely that hashis is the cause of my underactive thyroid as I have Graves.
Yes, that is linked to hyperthyroidism. I experienced the same thing, but they went back to normal after my thyroid levels were back in the normal range.
Did they stay normal after treatment? Or do your levels keep fluctuating? Thank you 😊
No, they should stay normal once your thyroid levels are controlled.
Do you have to take medication all the time to.control it?
To be clear, I was talking about the liver enzymes going back to normal once thyroid levels are stable. But yes, I have Graves' and am still on a low dose anti-thyroid medication to control my thyroid levels.
Is Hashi's the same as hashimotos?
Yes - just saves a bit of typing.
Clearly FT3 and FT4 are high suggests hyperthyroid (Graves)
But early stage Hashimoto's can give similar results
GP can and should test TPO and TG thyroid antibodies.
They may not be able to test TSI or TRab, usually these have to be done by endocrinologist
GP can and should test vitamin D, folate, ferritin, iron, magnesium and B12
Cholesterol levels might be useful too
With hypothyroidism Cholesterol tends to be raised
Thank you!
My liver function test came back saying make an appointment with your Dr. My results were:
Serum ALT level 37 u/l (0-35)
Serum gamma GT level 62 u/l(0-45)
Would this be related?
Also I have never pain in my arm bone, no injury and has got worse over 3/4 months. Could that be related?
My b12 Nd folate are fine, the other items are not on the list. I'll speak to the endocrinologist about the rest.
Thanks
What is “fine”? What are the actual results with ranges for b12 and folate?
B12 is 407ng/l (180-640)
Floats 4.5uh/l (3.0-30.0)
Folate is low in range. Usual advice is to get this mid range. I also understand that B12 results under 500 may cause symptoms. SeasideSusie Do u have some recommendations for supplements?
Thank you, my doc didn't mention them and the results said Normal. If they are on the low side, any help would be great. Thanks.
Do you know what I can expect from my first endocrinologist appointment?
They should look at your results and ask about symptoms. They should give you a physical exam. They should look fit a cause for your overactive thyroid. First should be to test for TSI and/or TRab antibodies. If these are negative you need a thyroid scan. Do NOT accept a diagnosis of Graves without an antibodies test. As urges have said this could be a hashis flare.
B12 is 407ng/l (180-640) - pg/ml is the same as ng/L
This is on the low side according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Folate 4.5uh/l (3.0-30.0)
This is very low in range, should be at least half way through range.
You could supplement with a good B Complex containing 400mcg methylfolate and methylcobalamin. This should raise both folate and B12. Don't buy a brand containing folic acid and/or cyanocobalamin - methylfolate and methylcobalamin are the bioavailable forms. Recommended brands are Thorne Basic B which gives 400mcg of each with the suggested dose of 1 capsule, or Igennus Super B which gives 400mcg methylfolate and 900mcg methylcobalamin with the suggested dose of 2 tablets.
Thank you. Is it worth waiting to speak to my endocrinologist first? Thank you for your help. Alicia
Thank you. Is it worth waiting to speak to my endocrinologist first? Thank you for your help
Possibly not. Your results are within range, that's all a doctor looks for. They have no concept of the fact that where in the range can make a huge difference. Sometimes, even when results are out of range, members have been told "it's only a little bit low, nothing to worry about" which is, of course, total nonsense.
Ok, thank you for your help. I'll have a look into it. Alicia 😊
Could be low vitamin D
Extremely common with any autoimmune disease
Is this something that the endocrinologist would normally test for?
The endo is unlikely to test vitamin levels automatically if you are hyper, but you can ask your GP if they will do it.
Hi Alicia,
I have graves disease and my numbers looked similar to yours at my bad points. I'm sorry this is happening to you but I'm glad you have an endo appointment n a probable answer. If your family has a history of graves the endo will definitely do an antibody test.
In the mean time there is stuff you can do to help yourself. Firstly Google Elaine Moore.com. She's a pharmacology researcher, who had graves. She was mistreated by her doctor n made it her mission to learn everything about graves disease n inform others. So she's extremely knowledgeable, scientific and very very informative. You will learn so much on her website. Plus she answers questions too!
Secondly you can do yourself a favour by reducing the iodine levels in your diet (seaweed, sea salt, shellfish/sea fish) and increasing the amount of goitrogenic foods (blocks thyroid naturally = includes brocolli, cabbage, spinach, there's a whole list online). Apparently a cup of goitrogenic foods can be the equivalent of a small dose of antithyroid so doing this with your diet can help you until you get carbimazole but can also enhance your treatment and help you be on a lower dose.
Also what do you think I can expect from my endocrinologist appointment? Thank you
At your first appointment, if you haven’t had FT3, FT4 and TSH tested within the last week or so, they will probably order these. They should also test for Graves’ antibodies (TSI or TRAb) if these haven’t been done, and possibly TPO too. If your thyroid levels are still over the reference range at this point and you don’t have positive TSI and/or TRAb, you may still have Graves’ although it is less likely. In this case, they should order additional tests, typically a thyroid scan or possibly an iodine uptake test to help identify the source of the problem.
They should explain any treatment plans, and give you the opportunity to ask questions about the diagnosis. If they prescribe anti thyroid treatment (carbimazole or PTU) they should also explain that there is a rare but dangerous side-effect which can cause your white cell count to plummet, and that if you get a sore throat or mouth ulcers while under treatment, you should stop taking the tablets and head straight for your GP’s surgery or A&E and request an immediate blood test. This isn’t something to worry about, it is a rare occurrence, but you do need to be aware of it.
They will probably mention ‘radical’ treatments (radioactive iodine treatment - RAI- or thyroidectomy) which will destroy or remove the thyroid, in the event the antithyroid treatment is unsuccessful; assuming you have Graves’, it should be at least a year to eighteen months before you really need to consider these options, so listen to what they have to say, research them yourself and listen to what people say here, but don’t worry about them overly for now.
They should ask about any changes to your vision - blurred vision, pain or grittiness, changes to colour vision - as there is a related condition, thyroid eye disease, which will at least need monitoring if you are affected. (If you have a regular eye test in the meantime, tell them you may have Graves’ disease).
Graves’ can’t be cured, the aim is to encourage it into remission, so antithyroid treatment is likely to last 12-18 months before they take you off the tablets to see what will happen. This leaflet explains a bit more about the treatment.
btf-thyroid.org/information...
Initially you will probably have blood tests every 4-6 weeks, although the intervening period will increase as your thyroid levels come back into range. You should also have regular endo appointments, maybe every 8-12 weeks. Usually you will be asked to get FT3, FT4 and TSH tested a week before the appointment - for convenience, this is usually done in your GP’s surgery.
This info from NICE gives an idea of what to expect .
cks.nice.org.uk/hyperthyroi...
The guidelines aren’t mandatory, but they do provide something you can use as a basis for querying your endo or GP if they don’t appear to be following them. The only thing is, they don’t mention FT3 tests. If you have Graves’ FT3 often remains above range longer than FT4, and if your thyroid takes off again, FT3 will usually rise first, so it’s important they test it every time. In practice, few people here with Graves’ have a problem with this, and usually FT3, FT4 and TSH are tested regularly.
You may have to wait three months or so for an endo appointment, and with those thyroid levels, this will be pretty uncomfortable. In the meantime, some typical and distressing symptoms, including breathlessness and tremor, can be helped with beta blockers, something to discuss with your GP.
Thank you, that is really helpful. I'll have a look at the website. I had a look at foods to avoid and on some sites it says avoid red meat and on others it says eat it. The pain in my bone is excruciating, and now some days my whole body throbs my joints are do painful I struggle to get out of bed. I had expected my gp to say it was all in my head. It was nice to have a diagnosis, and to know it wasn't all in my head!
If you don't mind saying, what treatment did they plan for you?
Thank you. Alicia 😊
I had very few symptoms other than hair loss n tremor so for me it was a weird one of extremely low dose carbimazole n I also choose to add immunomodulants which helped a lot. It naturally burns itself out as well
"The pain in my bone is excruciating, and now some days my whole body throbs my joints are do painful I struggle to get out of bed."
You need Vit D testing. If your doctor wont do it then do it privately with a fingerprick blood spot test with this NHS lab that offers the service to the general public for £29
vitamindtest.org.uk/index.html
Is vitamin d related to thyroid issues? Go has never mentioned any vitamin deficiencies. Thank you. Alicia 😊
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