TSH of 69

[trumpisaflump]

Wonder if someone could advise me. I went to the GP a month ago with signs of what I thought were ovarian cancer. I had a hugely extended abdomen and felt really full and found it difficult to eat. I’m underweight so hypothyroidism wasn’t on my radar at all. My GP checked all my bloods including my Ca125 which thankfully ruled out ovarian cancer however my TSH was 69. He has started me on levothyroxine 100mcg daily and I go back in Feb to have my levels checked.
There’s a mine of information out there on thyroid disorders so I’m kind of drowning in information at the moment. I’m wondering if I should be doing anything else. For example I gather hypothyroidism causes a loss of parietal cells in my stomach which reduces hydrochloric acid which may explain my bloating and digestive issues. However my bloating is still as bad as ever so my GP has referred me to a gastroenterologist.
I’m wondering if thyroid antibodies are worth getting checked. What do these add once I know the level?
Any other practical advice welcomed! Thanks

[Sunmoonearth]

Celiac. Your digestive symptoms fit and along with being underweight. There is also research evidence for untreated celiac causing hypothyroidism.

I'm not an expert at all. I'm newly diagnosed with autoimmune disease myself.

I've been tested for celiac three years ago which isn't one of my issues but rheumatologist recommended gluten free diet (or autoimmune protocol diet) and I came across the hypothyroidism and celiac link when reading up on it all.

Btw they all say not to go gluten free until you've been tested.

I hope your gastric appointment is soon!

[Sunmoonearth]

Your GP can check for celiac.

Print out the list of symptoms from celiac UK and go back. That way you may not have to wait so long to find out!

[trumpisaflump]

OK thanks @Sunmoonearth. I'll look into that.

[trumpisaflump]

Bumping for any more ideas!

[NeurotrashWarrior]

Hi,

This is a really helpful book, not least as it gives a list of known medicines that interfere with thyroxine as well as a list of other auto immune issues, of which coeliacs can be one. However, don't stop gluten till after a test if you want to try that.


Thyroid Disorders (Understanding) (Family Doctor Books) https://www.amazon.co.uk/dp/1903474191/ref=cmswwrcppapiii_bAmfEbF47X62J

[trumpisaflump]

Thanks @NeurotrashWarrior I've ordered that book. I will email my GP to request the blood test for coeliac and I'm sure he'll be fine with that.
My GI referral has come through for next Tuesday but it's for a surgeon a not a gastroenterologist as I was expecting but I'll go see the surgeon anyway. My bloating is getting worse. I look about 9 months pregnant! It's so uncomfortable.

[DonPablo]

I don't know about a connection with bloating, but I came in to say, Holy shit. 69? You must feel dreadful?

[NeurotrashWarrior]

Wouldn't let me post below that link!

This is the best charity for a newly diagnosed person imho. It's the official charity working under the thyroid association of endocrinologists.

I would digest all the info in these two before looking elsewhere on the Internet tbh; there's a lot of quackery and also certain trends among the thyroid community mainly as it is hard to get on top of feeling well, but it is doable.

Key thing to understand is that getting well (or getting ill) can take a long time. I've recently been reminded after a phase of hypothyroidism, as thyroxine has a long half life (around 7 days) it takes a good 6 weeks or more to reach correct levels and it then takes another 4-6 weeks for symptoms to begin to improve.

You are likely to need to adjust your dose after a blood test after starting the 100, 6-8 weeks is best and keep going really till TSH is ideally around 1 or just below and then see how you feel for a good few months. Be mindful of this and find out results as some gps accept 2.5 as ok; generally (as the bmj book says people need to be around 1.)

I developed horrendous constipation when underactive and I know if I'm balanced actually via my gut often. Overactive can cause diarrhea. I had to cut out museli and brown rice and eat well cooked porridge and apples to help till it eased.

You shouldn't need to do anything other than take your thyroxine regularly. Consistency is key with thyroxine. As much as possibly 30 mins or more away from food and other drinks. Read the leaflet carefully as a lot interferes with it.

Other levels that may affect how you feel are ferritin (iron), over 70 is best, vit d, vit b12 and folate. Find out if these have been tested; if not and if after you've got your levels well controlled and still have some issues with fatigue, ask to get these checked. Iron can drop a lot with hypothyroidism so it's worth checking.

Regarding diet just eat healthily, slightly lower carbs perhaps, lots of protein and iron rich. for best iron absorption, you could try making sure iron rich foods are eaten with orange juice and not within and hour or more of anything with calcium in it or milk.

Soya can interfere with absorption, really good info here: www.btf-thyroid.org/thyroid-and-diet-factsheet

Selenium is also really important for conversion of thyroxine (t4, technically a prohormone) to t3 which is the active form of the hormone.

I recently read a paper that hair loss won't correct until zinc levels are optimum. I used to take berocca for b vits but you'd need to take vit d separately as it isn't included. At the mo I'm taking a breastfeeding multivitamin tablet and an extra vit c and zinc fizzy tablet when I remember (as am bfing).

I wouldn't start investigating things like gluten unless you notice a big difference if you avoid for a week or so as so many of your symptoms could be thyroid based and could take a while to go away.

FWIW, when you are well, exercise and strength building exercise is really important. You will find it incredibly hard to do until levels are good and it will take a while for you to be able to do much so pace very carefully. But it actually makes a difference to the whole system, possibly boosting conversion of t4. Muscles can waste in either hypo in hyper thyroidism so keeping strong is very important.

[NeurotrashWarrior]

Sorry that was a bit epic and with your thyroid brain might be a bit confusing!

I missed you have a referral, sorry!

[NeurotrashWarrior]

Oops charity link:


www.btf-thyroid.org/

I'd join as you can have questions answers by professionals and the magazine is really helpful. Very helpful patient videos on the website.

[NeurotrashWarrior]

Ps they don't bother with antibodies anymore if tsh is that high as it's obvious you have them and they're attacking your thyroid.

The knowledge doesn't help treatment.

As a pp said, undiagnosed coeliac can trigger autoimmune hypothyroidism but again the treatment is going to have to be thyroxine.

[trumpisaflump]

Thanks @NeurotrashWarrior that's all really helpful. I've been on Levothyroxine since the middle of November so I'll get my TSH rechecked at the end of Jan. I was going to try and get my coeliac blood test then too. All my haematology bloods were normal (Hb was 137) but I haven't had my Vit D levels or B12 checked.
@DonPablo amazingly I actually feel fine. My only symptom is hugely swollen abdomen! Feel a bit tired but nothing too bad.

[trumpisaflump]

@NeurotrashWarrior I agree there's lots of quackery out there online on thyroid disorders. My brain hurts reading it all and I feel a bit anxious about it!

[nearlynermal]

Wow OP, you beat me! I thought my TSH of 50.1 was impressive.

Some great PPs, and I didn't have the digestive issues, so not much to add except that another thyroid sufferer told me takes a year before you feel 100% back to normal. I found that as well, but I had a big improvement within 6 weeks.

Good luck, and keep us posted

[fleariddenmoggie]

www.ncbi.nlm.nih.gov/pmc/articles/PMC1124444/

This is an interesting case study about a women with similar symptoms. Levothyroxine greatly improved her situation

[trumpisaflump]

@fleariddenmoggie Thanks for that. I had already read that article! I just don't want to presume it's linked to my thyroid just in case I'm missing something. Thanks everyone

[natwebb79]

Sorry I'm not much help as very recently diagnosed myself but as someone whose TSH came back as 83.2 it's good to see I'm not the only one with a bonkers result! I really hope you get it sorted soon.

[trumpisaflump]

@natwebb79 thanks. I've been in levothyroxine now since November and got my blood checked a couple of weeks ago. All back to normal. Well my TSH was normal at 1.5 and my T4 was a bit high at 22.5 so I'm continuing on the same dose and rechecking bloods in a few months. My initial symptoms are all still there though. I'm still extremely bloated. Had an endoscopy so just waiting on the biopsy results for coeliac.
Hope you feel better soon and your levels stabilise as quickly as mine!

[pashmina696]

Try betaine with pepsin after each meal- until I started t3 I didn't produce enough stomach acid on t4 alone so had really bad indigestion every day. My tsh had been in the 70s. Apple cider vinegar may help too.