Advice for Recent Blood Results? : I was... - Thyroid UK

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Advice for Recent Blood Results?

Kim327
Kim327

I was diagnosed with Graves Disease Feb 2019. Was on Methamazole to regulate went to hypo and slowly got off medication. Been off meds for about 6 + months now. Been checking blood work every 5 weeks or so. Image shows my April and June results. TSH is now borderline Hyperthyroid My Endo said. I cannot gain weight and I am in menopause. Weighing about 109 at 5’ 5” tall. I am eating more than 2,000 calories a day. My Endo did not put me back on medication now and wants to wait 4 more weeks to re-test blood. However, I feel awful, not sleeping, heart palpitations, TMJ, gastritis and headaches! Should I be put back on meds or wait? I’m not sure if I should just take out my thyroid. Could this be all due to menopause?

Any advise is appreciated!

Thank you!!!

32 Replies
oldestnewest

No way are you borderline hyper. Your FT4 is only 58.06% through the range. Your TSH is low, but not under-range, and as you have Grave's, it might never rise very high again. I really don't think you need to be on carbimazole with those results.

You're probably gaining weight because your FT4 is too low, and your cholesterol is slightly high, so that could indicate that your FT3 is also low. But, it is true that people with hyperthyroidism can put on weight. They don't all lose it. Trouble is, doctors tend to divide symptoms rigidly: this is hypo, this is hyper, and never the twain shall meet! Whereas, in reality, a lot of the symptoms can be of both hypo and hyper.

I'm not an expert on Grave's, but if it were me, I wouldn't want my FT4 to go any lower.

Kim327
Kim327 in reply to greygoose

Thank you for your reply. I’m actually losing weight. I’m about 15 lbs below normal now. With menopause I’d expect to gain now. Wasn’t sure if this could be my thyroid even though I’m slightly hyper according to my Endo.

greygoose
greygoose in reply to Kim327

Well, I'm not impressed by your endo, then! Is he a diabetes specialist?

Kim327
Kim327 in reply to greygoose

I am not sure!

greygoose
greygoose in reply to Kim327

99.9% chance he is. It's very, very rare to find a thyroid specialist.

You might need to take a low dose of Levothyroxine to help you to go into remission. My levels were very low after I stopped taking PTU. I am not an expert but I do have Graves' so I am speaking from experience. Elaine Moore advised me to do this and it worked. Have you seen her site? If you haven't I would join and ask her advice. She helped me get diagnosed when my GP thought I was suffering from the menopause for over 2 years. You can read my story on my profile page if you are interested.

Here is a link to Elaine Moore's site

elaine-moore.com/

Kim327
Kim327 in reply to Lora7again

Thank you for your advice! I will definitely take a look!

SlowDragon
SlowDragonAdministrator

Your vitamin D level is rather high. Presumably you are supplementing.

Have you had ferritin tested?

Have you tried strictly gluten free diet?

Kim327
Kim327 in reply to SlowDragon

Thank you for your reply.

Yes, I’m supplemented with D3 and my Endo told me to stop until Friday and restart with half the dose.

I have tried Gluten Free and it didn’t help much. Because of losing so much weight my Endo and Gastro recommenced I eat everything in moderation.

I have had my Ferritin tested but need to locate those results. I think they were normal.

SlowDragon
SlowDragonAdministrator in reply to Kim327

It didn’t help much ...or it didn’t help at all?

High protein and lots of good fats can help with weight gain

Kim327
Kim327 in reply to SlowDragon

I’ve been trying High protein drinks and healthy fats and haven’t been gaining or losing now. Just staying at 109 for a couple of months now, unfortunately. I drink over 1000 calories in Kate Farms shakes meal replacement and tube feeding Alone plus meals to bring me over 2,000 calories a day and some days 3,000. I do workout on the treadmill but just 30-45 minutes slow on an slight incline to keep myself moving and sane. It helps my mind tremendously!

Hello again Kim

I'm so sorry you have had a difficult time this past year and think I remember you are positive for both Graves and Hashimoto's ?

I don't have any answers I'm afraid, but it might be worth contacting Elaine Moore in the States - she is a much respected and leading authority on Graves and auto immune thyroid disease health issues and as having the disease herself has collated, researched and advised many people over the years, dealing with, and living through, this poorly understood auto immune disease.

Hi Pennyannie,

Thanks for your reply! Hope you are doing well

I was only diagnosed positive for Graves. It’s been a rough year and a half that’s for sure

I’ve heard a lot about Elaine Moore. I definitely will look into getting in touch with her for help. There has to be someone with answers. I feel like I’m a guinea pig to just test, wait and see and not helping with all my pain and symptoms. It’s no way to live.

Thanks again!

pennyannie
pennyannie in reply to Kim327

I think you owe it to yourself and Elaine might just know of an endocrinologist within your area who you can advise you.

Cannot see from those results why he d think you were hyper

Kim327
Kim327 in reply to Wetsuiter

Endo said I was borderline hyper. He is retesting in 4 weeks. The thing is my TSH went from 1.31 to .264 in two months. I am concerned since my weight is low, headaches and heart palpitations started again and I can’t sleep. Some mag be due to menopause but these last few days have been worse than before.

Wetsuiter
Wetsuiter in reply to Kim327

but those results arent border line

Kim327
Kim327 in reply to Wetsuiter

Would you say I am hyper? That’s why I am so confused what to do

Wetsuiter
Wetsuiter in reply to Kim327

Apart from the fact that she misread what you said about your weight, i agree with greygoose

greygoose
greygoose in reply to Wetsuiter

No, she didn't misread what was said about weight, it just didn't register because where I am, we measure weight in kilos. Pounds mean nothing to me. I just took it the OP had put on weight because that's what most people complain of. :)

Kim327
Kim327 in reply to Wetsuiter

Thank you !

Thank you! Sorry I forget we do pounds in US! Appreciate everyone’s feedback and advice!

Your TSH suggests u are moving towards hyper.

Why was FT3 not tested given u are having palpitations?

Graves antibodies should be tested as well. TRAb or TSI would be good. Either of this would give a good indication of where your Graves is.

The doctor stopped your methimazole?

Was antibodies test done prior to stopping the methimazole?

Kim327
Kim327 in reply to ling

Yes, doctor stopped because in was going to hypo . He tapered me off My antibodies were tested when diagnosed to show Graves. I get my blood tested every 5 weeks. My TSH was 1.3 in April and then dropped quickly to what it is now.

ling
ling in reply to Kim327

Graves antibodies are used not only to diagnose Graves, but also to decide if one is ready to completely come off the methimazole.

In April last year, your TSI was still high. Antibody levels may not move in tandem with TSH FT3 and FT4 levels. So even as the rest of the levels are headed towards normal or hypo, your Graves antibody level could still be above normal, and that would be an indication that u should not come off the methimazole completely, as chances of a relapse are high, and the Graves has not yet run its course.

Kim327
Kim327 in reply to ling

Thank you!! This is great to know. I will definitely request these labs for my next blood tests. Thank you so much for this helpful information!

pennyannie
pennyannie in reply to ling

Hello Ling

I think you are very fortunate with your endocrinologist as it reads as though you have been given the time and expertise to learn and understand the nuances of Graves Disease.

At my very first hospital appointment with Endocrinology in 2004 I was told I was to be given RAI treatment in about 15 / 18 months time. I mentioned that I was now ok on the Carbimazole, and back at work, but advised AT drugs were only prescribed short term and that RAI was the better option and I would be better !!!!

Hey ho - I guess it's down to the people and how they " see " their job / profession.

ling
ling in reply to pennyannie

Actually no.

Because I didn't have a single good doctor throughout, that pushed me into having to read up and research when the GP kept pressuring about RAI at every appointment. A similar experience to yours.

The breakthrough point was finding the 2018 European Thyroid Association Guideline for the Management of Graves’ Hyperthyroidism. Reading it thoroughly, offered CRITICAL info on how to manage the Graves. It's a wonder doctors don't bother to read the official research?!

The thing in this thyroid journey is never say never. I don't rule out the day I might need to destroy my thyroid if it causes more problems than is sensible to keep it.

These 6 years have bought time to understand this thing and to know what brings stability and what does not. And hopefully, the ability to make a better decision when the time comes.

Lora7again
Lora7again in reply to ling

Am I moving towards hyper because my TSH is 0.38? It was 0.28 when the consultant in A & E tested it in February but this was after I had eaten so that might have affected it. I actually feel very well at the moment and I don't think the TSH is a good indication of thyroid function. I think the OP should ask Elaine Moore because has a lot of knowledge about Graves' disease.

Graves antibody testing is a great way to guide treatment. However, few endos seem to know this, which results in patients being taken off methimazole too early to try for remission, and many ending up relapsing and thinking the only solution is to have their thyroids destroyed. In some cases, ya sure, maybe.

But in other cases, had the methimazole been given sufficient time to work its immunomodulating effect on the Graves, who knows, chances of staying in remission could be a lot higher.

Cheers and all the best.

Great info! Thanks so much for helping me with this. I was definitely thinking about getting rid of my thyroid if I relapsed. It’s been a very hard year and a half for me. I really appreciate your advice!

ling
ling in reply to Kim327

You're welcome Kim.

But know this. Everyone comes to this disease with different states of health so it interacts with the Graves differently, and causes different symptoms. Should the day come when the Graves is causing u more problems than it's worth keeping the thyroid, u might then need to seriously consider getting an RAI or thyroidectomy.

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