Severe Morning headaches

[melross]

hi I was diagnosed some years ago with hyperthyroidism I was prescribed Carbimazole and in more recent years changed to PTU. Both have horrible side effects for me, but I’ve lived with it as I don’t want to loose my thyroid. Side effects are, Mainly severe headaches. I have recently taken a break from the meds but I get severe headaches first thing in the morning. Anyone else had similar and if so, is there anything else I could try. I’m very anti RIA or surgery but I think it’s looking more likely to be the only option if I can’t tolerate the meds. Any advice please?

[PurpleNails Administrator]

I have higher occurrence of migrainous headaches the higher my FT4 & FT3 are.

The GP doesn’t think there’s any connection but I’m very certain of it.

Do you have any recent thyroid function? TSH, FT4 & FT3?

How is your sleep?

I take propranolol as a migraine preventer. Often given along side anti thyroid medication . You take blood pressure medication so you may not be recommended propranolol as well.

What dose of PTU do usually take?

Antithyroid medication temporarily reduces new hormone production, the effect takes time to control & stabilise levels, existing high levels will gradually lower.

The medication is best taken very consistently, same time every day. Stopping & starting not recommended as side affects can be more severe & different each time you restart.

Low dose longer term and very small adjustments much better than restarting.

I have a large hyper nodule confirmed by negative TSI & TRab antibodies & thyroid uptake scan which definitively shows function through thyroid. Your previous posts shows your TPO ab was negative but did you ever have Graves antibodies tested?

[melross in reply to PurpleNails]

thanks for your reply. My latest bloods shows the following;

TSH <0.01 my/L , FT4 17.4mol/L, fT3 7.7pmol/L.

I take 50mg of PTU twice daily morning and evening. Recent Uptake scan showed one side thyroid gland slightly enlarged, both lobed demonstrate heterogenous uptake ( not sure what that means)? No discrete focal uptake to suggest toxic adenoma. Scan showed Asymmetrical enlarged multi modular thyroid. All nodules appear benign appearing BYA U2. Although I haven’t yet had a consultation appointment to explain all of this, but the hospital letter confirms I have benign multinodular Goitre. The consultant doesn’t think I have Graves. What’s the test for Graves.

I have to admit have have been stopping and starting as the headaches are unbearable. Perhaps I have to grin snd bear it!

I am on BP meds but currently on a beta blocker which I could possibly swap for Propranolol.

[PurpleNails Administrator in reply to melross]

Do you have lab ranges? Ranges vary between labs, so to accurately interpret they are needed. by most ranges your FT4 is ok but FT3 is high.

Uptake scan “light up” areas or function. The patterns are quite distinct. I’ll search for an image.

Heterogenous means varied uptake likely a patchy image not uniform uptake. A focal area would be seen with a solitary nodule but yours shows multiple areas.

Graves autoimmune is diagnosed by positive TRab or TSI antibodies. TGab & TPO are present with both Graves & Hashimoto’s (autoimmune thyroiditis).

Might be worth asking dr for something to help with headaches. Propranolol has mild antithyroid & it helped me to lower FT3 which was disproportionately higher than FT4. Usually FT3 is lower % in range compared to FT3. Eg FT4 50% FT3 40% of their ranges. Was originally prescribed as had high heart rate as thyroid levels high. Should always be reduced slowly. Specialist wrongly told me to stop a high dose & was quite unwell. GP but me back on them a migraine preventer and gradually lowered to low dose. There may be a more suitable alternatives.

100mg PTU is equivalent to 10mg carbimazole, & that’s quite a low dose, understandable you don’t want to increase as side affects.

My TSH has always been undetectable, more important to adjust dose by FT4 & FT3.

You may find L-cartinine a helpful supplement to try. I took it for some time & found it did lower FT3 slightly. It didn’t last forever, the affect wore off. I alternated been acetyl l-cartinine & l-cartinine.

[melross in reply to PurpleNails]

Hi The ranges are as follows; TSH (0.4-4.9mU/L), fT4(9-19pmol/L), fT3 (2.6-5.7pmol/L. I didn’t receive any images following the uptake scan. Just a written response.

Thanks again for your kind reply and assistance. Much appreciated.

[PurpleNails Administrator in reply to melross]

FT4: 17.4 pmol/l (Range 9 - 19) 84.00%

FT3: 7.7 pmol/l (Range 2.6 - 5.7) 164.52%

With ranges you can see exactly the % of results. FT3 is over range. & FT4 in range but I think you’d feel better with both lower. You may have an issue that FT4 would drop too low before FT3 in range. Usually this will balance out, & PTU is said to have more effect on FT4:FT3.

[PurpleNails Administrator]

😀

Example of thyroid uptake scan images

[pennyannie]

Hey there again :

Did you ever manage to get the TSH - Thyroid Receptor antibody blood test run for Graves Disease - maybe written as a TRab / TSI ?

We do now have some research that might be worth considering :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

So you have been on the AT drug for some time and presume if this was Graves something more would have developed and guessing it's more a case of the nodules causing these spikes in thyroid hormone production.

Neither AT drug seems to have suited you - do you associate these headaches with either or both of the Carbimazole and PTU ?

Could this beta blocker be causing the headaches ?

If the goitre is pressing on your windpipe and or causing swallowing problems I would think a thyroidectomy the better option.

[melross in reply to pennyannie]

hi I did. Results showing Trab antibodies was less than 0.3. Negative TSH receptors antibodies <0.3 IU/L. I don’t think it’s the Beta blocker, as it’s a recently new drug. It seems after I take the hyperthyroidism med it triggers eit and when I wake in the morning., it’s at its most severe.