>TSH 150

[nancypapa]

Hi guys my TSH right now >150 I feel horrible but the doc can’t give me any med it has to go down by itself because I’m a hyper patient that was taking methimazole and they had to stop it because my TSH started going high. Anyone have experience this?

[jimh111]

They could give you levothyroxine but it would probably take longer to have effect than letting your thyoid pick up. On the other hand they could give you some liothyronine for a short while and this would take effect quickly. I guess it really comes down to how hypo you are now, what your fT3 and fT4 levels are. If they are seriously low they should give you some short term support.

[nancypapa in reply to jimh111]

Thank you I have appointment today afternoon you right my doc needs to do something

[jimh111 in reply to nancypapa]

Make sure you get a copy of all blood test results.

[SlowDragon Administrator]

Essential to test Ft4, Ft3, vitamin D, folate, ferritin and B12

Get these tested tomorrow

[nancypapa in reply to SlowDragon]

I think we should all be careful with doses of medication we are prescribed by our doc reactions has a lot to do

[SlowDragon Administrator]

Have you definitely had Graves’ disease confirmed by testing TSI or Trab antibodies

Hashimoto’s (autoimmune HYPOTHYROID thyroid disease) frequently starts with transient hyperthyroid results and symptoms.

[nancypapa in reply to SlowDragon]

Yes. For many years I was a hypo patient and then do to levothyroxine dosis I became hyperthyroidism patient rare but that’s what happened then they put on methimazole and that’s when everything when wakkk. Right now my TSH is >150 with all kinds of symptoms and my doc yesterday told me he thinks my thyroid is dead T4 free 0.04 so finally he prescribed 100MCG Levothyroxine. Right now I’m waiting for my levels to go normal to have my thyroid remove completely

[pennyannie in reply to nancypapa]

Hello Nancypapa ;

What have you been diagnosed with ?

I have Graves Disease and had RAI thyroid ablation in 2005 and my thyroid is now dead but still in my neck.

Many people have atrophied thyroid glands but they do not risk having surgery - why would you ?

[nancypapa in reply to pennyannie]

Graves disease but can’t take methimazole I suffer severe reacción to this pill, muscles spam, migraines, muscle numbness the right side of my body fells numb. I mean I’m in bed now for a month after stopping medication

[nancypapa in reply to pennyannie]

The reason I feel they don’t want to do RAI is my eyes I get doble visión sometimes one of the side affects to my illness

[pennyannie in reply to nancypapa]

So do you have Graves Disease ?

[nancypapa in reply to pennyannie]

Yes

[pennyannie in reply to nancypapa]

OK then - I found the Elaine Moore Graves Disease Foundation website a very useful adjunct to this forum. There is also an open forum much like this amazing platform where you can ask questions of other Graves patients and Elaine is available to answer questions personally if you choose.

Elaine has the disease, as do I , and has written several books on the subject as she went through RAI and finding no help with her continued ill health started researching this poorly understood and badly treated auto immune disease herself.

Elaine is now something of an authority on Graves, especially researching on the auto immune component of this disease which mainstream medical tend to ignore once it's established you have over range TSI and or TR ab antibodies.

Your thyroid is the victim in all this and not the cause as the cause is your immune system attacking your body,.

The thyroid is such an important, major gland, and when it goes a bit haywire it can be seen as life threatening in some circumstances.

There is another AT drug - Carbimazole - has this one be trialled on you ?

Removal of the thyroid doesn't stop your immune system attacking your body.

All this does is switch you from " hyper " to " hypo " and a discharge back out into primary care where you will be needing daily medication for the rest of your life, and with the NHS believing that primary hypothyroidism is more easily treated than hyperthyroidism.

I had the RAI in 2005 at age 58 and deeply regret this as now I manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.

I have only ever been treated in primary care with T4 - and became very unwell around 8 years after the RAI : having been refused anything other than T4 thyroid hormone replacement I now self medicate on full spectrum thyroid hormone replacement which I buy myself and am now much improved.

[nancypapa in reply to pennyannie]

Thank you Penny for your info. I’m 58yo now feel horrible but hopefully soon feel better thyroid can be very tricky 🌹💌

[pennyannie in reply to nancypapa]

I find it a little odd as with Graves Disease the TSH is generally stuck down at 0.01 -

A TSH reading like yours is generally an indication of being hypothyroid ??

Maybe I'm confused ?

What antibodies do you have as over range and positive ?

[nancypapa in reply to pennyannie]

I have graves but do to a side affect to methimazole your TSH can go high then you are hypo because right away they have to stop medication is a roller coaster back and forth. Yes I’m diagnosed with Graves’ disease (hyperthyroidism)

[pennyannie in reply to nancypapa]

Which antibodies are over range and positive ?

Have you tried the other anti thyroid drug - Carbimazole ?

[pennyannie in reply to nancypapa]

There is also another, different anti thyroid drug Propylthiouracil commonly referred to as PTU ?

[Fruitandnutcase]

I’m confused too - I’ve got Graves - I’m in remission - and my TSH was at absolute rock bottom. My T4 was high and I don’t know what my T3 was because it wasn’t tested at the time. Such a high TSH seems quite odd and I can see why you would need to stop antithyroid meds.

You need to ask for copies of all of your thyroid blood tests including thyroid antibodies, vitamins B12 and D, folates and ferritin then post again.