Under active help: Hi at a loss again. Hope u can... - Thyroid UK

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Under active help

paul1978 profile image
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Hi at a loss again. Hope u can help. My wife is not coping what’s going on with me.

So had a TT aug 18

Sept TSH 1.8.

Oct TSH 2.4 and T4 19

Nov TSH 4.35

Have on going abdominal pain in the right flank started12 th nov 18

Had a colonoscopy today and it came back clear!!!

Can anyone explain what parts of the abdomen will be in pain when we are under active ?

How long before it gets better?

Only heat helps

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paul1978
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12 Replies
Hennerton profile image
Hennerton

Sorry you are struggling with Thyroidectomy. I have been there. You are becoming more hypothyroid and are clearly not on enough Levothyroxine. What is your dose and how and when are you taking it? Why did you have TT and have you had vitamins and minerals tested? The ones that may affect how you feel and also help to convert the Levothyroxine to useable T3 are iron, ferritin, B12, folate and vit D. Your GP could organize these and maybe you could also ask him to test T3 which is the hormone doing all the work but which is almost ignored by the NHS. Low levels can affect you in numerous obvious and less obvious ways.

When you have results, post again here. If the GP will not test you can have them done privately from information on this site.

You are on a bit of a journey at the moment but will find lots of help here so hold on and take heart. You will get better.

rjb112 profile image
rjb112 in reply toHennerton

"Your GP could organize these and maybe you could also ask him to test T3 which is the hormone doing all the work"

the test to ask for is Free T3 [and Free T4], not "T3".

just trying to save you some frustration......

paul1978 profile image
paul1978

Cancer. If I can get my TSH down will it fix my gastric issue?

MaisieGray profile image
MaisieGray

"Can anyone explain what parts of the abdomen will be in pain when we are under active ?" - there is no direct correlation in the way you are implying ie "I am hypothyroid therefore I will have a pain here". We are each different in how well we are medicated of course; but also different in how not being well-medicated evidences itself. It depends on so many factors - what other health conditions we have, how long our failing thyroid was untreated, our individual and/or genetic predisposition to certain problems etc etc. In your case, you may be very different from the next person who has a TT as a result of a cancer diagnosis. For instance, until the past couple of years when I developed IBS, for the majority of my 40 years being hypothyroid I had the constitution of the proverbial ox and never had gut issues of any description; whereas for other people, especially those with Hashimoto's, that's not the case. It's also important to remember that as important as it is, the world, and our health, does not begin and end with the thyroid, and that sometimes, symptoms can be evidence of something else going on - my GP constantly told me that certain symptoms were due to my insistence on being over-medicated and that he would invoke the frustration of the Cardiologist and Neurologist if I was to be referred to them .... in fact the Cardiologist discovered a probably inborn problem which became symptomatic only as more general age-related muscle deterioration kicked in, and for which surgery is a 'when not an if'; and the neurologist diagnosed that it was essential tremor that set me walking on a tangent and my hands shake, not an excess of exogenous thyroid hormones. So regarding your right flank pain specifically, frustratingly it can be symptomatic of so many different issues - including pancreatitis, kidney stones and infection, costochondritis, bladder infection to name a few. However, that said, your November TSH was too high (I can't say if it was over range as you've not given it - please always remember to do that) and if your FT4 was correspondingly low you may not be feeling as well and symptom-free as you should/could. Was your Levo dose increased at that point?

Regarding your wife, you've not said what in particular, she is having trouble with, but counselling or therapy might help.

I have never had gastric issues. I had my TT in October 2015 and experienced lots of pain on Levo until I started NDT, now all the pain has gone.

You only started your 200 mcg dose on Christmas Eve not long enough to see how you feel it take six weeks and then another blood test to find out what's going on.

Why not stick to the six weeks and then have a private blood test Medicheck Ultra is a good one showing all the tests that you require. It's probably a lot cheaper to order the test in January. Take the test fasting, first thing and leave of Levo for 24 hours prior to the test. If you are on the correct dose your TSH will lower which is what you need due to the cancer. It takes time and effort and we don't always feel well. Good Luck and a Happy New Year.

paul1978 profile image
paul1978 in reply to

Hi thanks. Do you mean buy the test now and use it in feb.

Can u buy it and just hold on till you wish to use it?

Thanks

in reply topaul1978

Yes you can use it within three months I usually buy mine this way. Sometimes on a Thursday it's cheaper too. When ordering I always have the nurse round to take the blood it costs around £39 for that. You may be able to have it done at your local surgery if you ask FOC.

I only test once/twice a year and the extra cost is well worth it for helping with your health. I could take Levo FOC as I am a pensioner but choose to source my own meds to feel well again.

SeasideSusie profile image
SeasideSusieRemembering in reply topaul1978

paul1978

Do you mean buy the test now and use it in feb.

You have 6 months to use a Medichecks Test but you will need to check the date on the blood collection tube to ensure it is still in date when you want to do the test. If the expiry date has passed, they will send you a new one if you contact them.

It's 12 months to use a Blue Horizon test.

Kitten44 profile image
Kitten44 in reply toSeasideSusie

I had one from May that I had not used, and not intended to use for some time. I contacted Medichecks in October to ask if it would expire, and they said they could "reactivate" it to give it another six months. Not sure how that works, but it was worth getting in touch with them to make sure it was ok. And I felt better about ordering another one when they were on offer, which again, I hope to use in a few months time. ;-)

SeasideSusie profile image
SeasideSusieRemembering in reply toKitten44

Yes, I think they charge a fee to reactivate if you go over the 6 months, but it's essential to check the expiry date on the blood collection tube.

Their Ts & Cs

4.3

The test is valid for 6 (six) months from the date we post the testing kit to you (the "Validity Period") - see clause 7 for further information about the dispatch of the testing kit. If you do not send a sample to the laboratory within the Validity Period your test will expire and you will not be entitled to a refund.

Kitten44 profile image
Kitten44 in reply toSeasideSusie

On no, they didn't mention that, and I didn't see the tube for any indication of an expiry date! :-0

(sent it this morning!!)

I forgot to mention that while on Levo I woke up to the most horrendous pain in the top of my legs to start I also had terrific pain in my ankle which I broke 30 years before and had never had a pain in since it healed 30 years prior. I had gone from very fit person to someone who couldn't even manage to get up from the floor without help, i.e my partner.

I am now feeling well apart from some brain fog but getting fitter, you can too.

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