Graves disease

[Cece_flower]

Is it possible to have Graves disease with "normal" TSH and T4, and no goiter?

[Lalatoot]

Antibody tests would confirm Graves.

[Cece_flower in reply to Lalatoot]

The lab here refuse to test T3 if TSH & T4 are "normal". I'm due thyroid test this month and if they don't do it again I will go private

[Adlindoc in reply to Cece_flower]

Same here. I went privately and did antibody tests which confirmed Graves’ disease. 3 months later the TSH and T4 were also abnormal

[PurpleNails Administrator]

Can you tell us a bit more about your history.

From your previous posts it looks like you have a diagnosis of hypothyroidism, as you have been started on levo? when was that? Presumably there was a starter dose which was increased but you stopped taking as you were unwell?

With Graves your TSH become suppressed & thyroid levels often reach 3x even 5x the normal level. You would not have a normal TSH & FT4. Although it doesn’t always cause an appearance or goitre.

Have you had any recent tests. Share them with the ranges. Have you had TPO & TG antibodies tested ? This will show if you have autoimmune going on. TSI ab & TRab antibodies confirm Graves but specialist will not test for this unless you have under range TSH and over range FT4 & FT3.

[Cece_flower in reply to PurpleNails]

I've had hypo for many years - nearly 20. Mostly been consistently on 100mcg, brand accord. I've not been right for about 3years, mainly low grade fever of unknown origin. This last year my thyroid has gone up and down rather quickly in the last tests which is unusual for me, it's always been very stable. These last few months I've lost weight, have started needing alot less sleep but with elevated energy levels. I've only just realised these last two things in the last few days. Out of desperation with the FUO I stopped taking my levothyroxine 7days ago and since then my low grade fever has been hitting normal again although not constant. Initially I thought it could be an ingredient but can't see any untoward ones. Last time I had T3 done was several years ago by Blue Horizon but I cannot remember the number and cannot find my email results. I've never heard of TPO and TG until one of the admins mentioned it earlier this wk.

I have asked for a print out of all my thyroid tests dating back to 2018 but I haven't received them yet so I don't have results to share currently

[PurpleNails Administrator in reply to Cece_flower]

If labs are testing TSH & FT4 you may never had had FT3 checked. FT4 is free thyroxine & FT3 free triiodothyronine - actual thyroid hormones. The TSH is a pituitary hormone which signal the thyroid to produce (thyroid stimulating hormone).

Antibodies are a different thing altogether and you may not have ever even had any antibodies tested in the past as it is to look for the cause of your original hypothyroidism.

Most primary hypothyroidism is autoimmune and early on fluctuations are not usually as the immune system attacking the thyroid destroys cells, they release thyroid stores & this causes the levels to rise, as more the thyroid is damaged over time the remaining thyroid is less able to produce enough hormone.

For this to occur after 20 years on 100mcg levo is very unusual.

Weight loss, high energy & less sleep do suggest thyroid levels too high, which would should show in your blood test result, but it can be due to other causes too.

I wouldn’t jump to the conclusion you now have Graves. If the low grade fever has been intermittent for 3 years that may also be separate to your thyroid.

It’s possible your FT3 which is the active hormone and causes many of the symptoms is what is changed. Unfortunately as it is not tested we are guessing.

Levo is T4 and your body converts it to T3, conversion can be greatly affected by folate, ferritin, vitamin D and B12. So if these are low conversion can be low.

Could you do a private test to look at Testing thyroid function, (TSH, FT4 & FT3) with nutrients all at once?

[Cece_flower in reply to PurpleNails]

The fever has been constant, not even intermittent. I currently supplement with vit D and B12 because of previous deficiency in both about 7yrs ago. My B12 was in the 700s last check in about June. Vit D not been tested since the follow up test from initial deficiency but I do supplement with 60ųg daily. I don't eat much dairy and stay out of the sun. I've been thinking to get the thyroid and nutrients done actually.

[PurpleNails Administrator in reply to Cece_flower]

I think that might be good step. You’ve previously had low levels but been supplementing so important to see how they are doing. After all it’s possible they may be too high and supplements not needed, or supplements still insufficient and that could be affecting FT4:FT3 conversion.

Sorry not sure where I got the “intermittent” bit from. You would hope your Dr would want to investigate more but as you say once they see normal range results they are happy.

Apart from the headaches any other symptoms? I have headaches which are worsened with sinus / rhinitis. The nasal spray may be reliving it.

Exactly what supplements do you take? Do you space them out for each other & other medications?

[Cece_flower in reply to PurpleNails]

I don't have the best diet (am working on it) so I doubt any levels are too high. The doctors have been quite frankly useless thevwhole 3yrs. Blood tests were normal so they left me to it. Including with the headaches. I got to the point in Dec last Yr of paying to see a private ent (had badly deviated septum surgery back in 2016 which were causing similar problems but it never occurred to the docs to refer me back). The private consultant in Dec took 10mins to say I needed ct scan. Had that the other week, no results yet. Since then I've found using a moistening spray has sorted the headaches. I thought sorted headaches would sort fever bit didn't have any effect. I take magnesium complex, vit C and a probiotic along with the b12 and d.

Don't need to worry about spacing now but I only spaced the levo, b12 and vit c before stopping the levo.

[SlowDragon Administrator in reply to Cece_flower]

No point testing via Blue Horizon until been on constant unchanging dose levothyroxine (and always same brand) for minimum 6-8 weeks

Suggest you test vitamin D now while you’re waiting for thyroid to resettle having stopped it

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If vitamin D is too low, increase dose vitamin D supplement

Approx how old are you

Conversion of Ft4 to Ft3 often gets worse after menopause…..or after GP reduced dose levothyroxine inappropriately

[Cece_flower in reply to SlowDragon]

Im not planning on starting my levo again any time soon so I'll hold off for now. I'm pretty sure my gp will still do the tests so she can knock herself out there lol. I'll get that vitamin d done this wk. I'm 45. Hormones all testing stable atm.

Do I need to stop the vit d supplement before the test?

[SlowDragon Administrator in reply to Cece_flower]

Only don’t take vitamin D on morning of the test

Stopping levothyroxine can make you extremely unwell. Very common to initially feel much better (as high Ft4 levels reduce) before suddenly crashing down dramatically

It typically takes 6-8 weeks for TSH to respond to change in dose of levothyroxine

Far Better to reduce the dose slightly ….eg 75mcg and 100mcg on alternate days

[Cece_flower in reply to SlowDragon]

OK I'll do that thank you. The doctors haven't been helping me with what's going on at all, I've basically been investigating myself to try figure out what's going on. I'm wondering if it's something in the ingredients but whatever it is, I think it's about time the doctors investigated. If I start to feel bad I will start my levo again but since stopping it is the only thing that's stopped the fevers..... 🤷🏻‍♀️ And it's the doctors jobs to find out why.

[SlowDragon Administrator in reply to Cece_flower]

Which brand of levothyroxine are you currently taking

Which other brands have you had

Many people find different brands are not interchangeable

Teva brand upsets many people…

Teva is only brand that makes 75mcg tablets…so if avoiding….

Accord don’t make 25mcg tablets …only 50mcg and 100mcg tablets

So if sticking with Accord you need 50mcg tablets and cut another 50mcg in half to get 25mcg

[Cece_flower in reply to SlowDragon]

Currently accord, as far back as I can remember it's been accord. Ah right OK, or maybe ask for 12mcg if they do them. I have had 25mcg and 12mcg before at odd times but I don't know the makes.

[SlowDragon Administrator in reply to Cece_flower]

Accord only make 50mcg and 100mcg

Best to stick to Accord

25mcg made by Wockhardt, Mercury Pharma and Teva

Teva best avoided as upsets many

12.5mcg tablets expensive (£12 per pack whereas all other sizes are around £1 per pack) and virtually impossible to get and only made by Teva

[Cece_flower in reply to SlowDragon]

Oh right ok. I don't recall having any problems with the 12.5. Do I ask the doctor or pharmacist about making sure it's accord? And if can I ask them to swap it when I go pick them up?

[SlowDragon Administrator in reply to Cece_flower]

You will only get Accord brand if prescription is 50mcg or 100mcg tablets

Assuming prescription is 50mcg…..check bag before leaving the pharmacy

Ask pharmacy to make note on your account that you want Accord brand only

Accord also boxed as Almus via Boots or Northstar via Lloyds

[Cece_flower in reply to SlowDragon]

I've just found the alternative brand names for same one. I was just told by the pharmacist that they only do tevo so I'm ringing my doc tomorrow about getting 50s instead of a 75mcg. As far as you know, are the circled ones in the pic correct?

.

[helvella Administrator Thyroid UK in reply to Cece_flower]

It's possible my medicines document might help:

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/shcwdwpedzr93...

From Google Drive:

drive.google.com/file/d/12N...

[SlowDragon Administrator in reply to Cece_flower]

Teva is the only brand that makes 75mcg tablets

Accord is also boxed as Almus via Boots or Northstar via Lloyds…..50mcg and 100mcg tablets only

[Cece_flower in reply to SlowDragon]

Low grade fever is back. Guess it's not thyroid related. Back to the drawing board. Thank you for all your help with everything.

[Cece_flower in reply to SlowDragon]

Spoke to my gp this morning, she's dropping my dose to 75mcg. 8weeks after I will have blood tests. They aren't likely to do T3 or any other antibody ones so I'm going to do blue horizon full thyroid, vitamin and mineral test at the same 8wk point.

[SlowDragon Administrator in reply to Cece_flower]

You could test vitamin D now to make a start on getting vitamin levels optimal

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Cece_flower in reply to SlowDragon]

Yes, I'm looking at doing that but am wondering would a thyroid antibody test be affected by the lack of medication?

[SlowDragon Administrator in reply to Cece_flower]

No ….well antibodies likely to increase if you become increasingly hypothyroid

[Cece_flower in reply to SlowDragon]

Ah ok. I thought maybe antibodies aren't affected unless you have hashimoto or graves. I'm just really not getting any help from my gp and feel like I'm having to think of things myself.

[SlowDragon Administrator in reply to Cece_flower]

90% of primary hypothyroidism is autoimmune thyroid disease

Diagnosed by either high TPO or high TG thyroid antibodies

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[Cece_flower in reply to SlowDragon]

Oh my, my brain is now boggled. I can't get my head round all that in the Paul Robson article.