Recently diagnosed with hashimotos but need som... - Thyroid UK

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Recently diagnosed with hashimotos but need some advice/help

Olives201 profile image
28 Replies

Hi, I am new here!

I have been experiencing symptoms since summer 2022 but have only recently been diagnosed in March this year after struggling to get answers. I have been seeing a FM since January this year and they have really helped get to the bottom of what is going on and have diagnosed me with Hashimotos.

I have been put on slow release compound T3 from Roseway Labs - they have just upped my dose to 45mg but I am still feeling utterly exhausted and have really bad constipation/gut motility, bloating etc. I have been really struggling to have BM's for the last year and it is getting worse and worse. I have tried numerous supplements, foods and diet. I try to walk everyday and know exercise would help but am not feeling well enough to do anything most days. I am on a variety of other supplements as I also have SIBO but think this is caused by the slow gut motility. They said if I feel okay on 45mg and am still not having bowel movements then I can up it to 60mg and to just keep checking my temperature.

From what I have read I am wondering whether just being on T3 is the right option? When I have asked to get blood tests for vitamins etc I have been told there is no point till my bowel is moving.

The only results they have shared with me are the below, having asked numerous times for the full results:

your free T3 was a bit low at 3.64, just below the reference range.

it's worth noting that your T4 is also on the lower side of normal. It's likely the T4 will fall when you introduce T3, as will the TSH.

You also had high TPO antibodies, suggesting an autoimmune thyroid process going.

Wondering where to go from here as desperate to get on top of things and wonder whether I need to see an endocrinologist?

Thank you so much

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Olives201
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28 Replies
SlowDragon profile image
SlowDragonAdministrator

Very, very few people need to be on just T3

Slow release T3 also doesn’t work for many people

Most people prefer ordinary T3, often taking 3 or 4 smaller doses spread through the day

Did you ever try Levothyroxine

Vast majority of people start on levothyroxine

What were your results BEFORE starting any replacement thyroid hormones

As you have Hashimoto’s it’s highly likely to have low vitamin levels

Strongly recommend you get vitamin D, folate, B12 and ferritin tested

Have you had coeliac blood test

Or are you already on strictly gluten free diet or dairy free diet

Olives201 profile image
Olives201 in reply to SlowDragon

Thank you for your reply. No I have only been on slow release T3 as that is what the doctor prescribed and they just keep increasing it.

They were my results before I started, the numbers aren't bad but my symptoms are bad in terms of tiredness, constipation (which is causing me the most concern), bloating, feeling cold and brain fog.

I have had a coeliac blood test in the past and it came back clear but I went on a strictly gluten and dairy free diet in March.

Do you recommend getting the tests done through a doctor/endocrinologist or is it okay to use something like medicheck or blue horizon?

SlowDragon profile image
SlowDragonAdministrator in reply to Olives201

Test via Medichecks or BH

Perhaps BH as includes snap-shot cortisol test

On T3 it’s quite harsh on adrenals

cortisol levels may be off

Olives201 profile image
Olives201 in reply to SlowDragon

Thank you! Will get some tests done asap!

Olives201 profile image
Olives201 in reply to SlowDragon

Sorry to ask another question, but do you think it is best to do the blood tests before seeking an endo?

SlowDragon profile image
SlowDragonAdministrator in reply to Olives201

Yes ALWAYS test before considering booking any consultation

A) essential to test vitamin levels and work on improving to optimal levels as first step

B) waste of time going to consultation without full test results

Come back with new post once you get test results

Suggest you consider adding starter dose Levo after test result

As separate change…..consider moving to ordinary T3 as 3 or 4 small doses per day

Olives201 profile image
Olives201 in reply to SlowDragon

Thank you!

Buddy195 profile image
Buddy195Administrator

Welcome to the forum Olives201

So we can offer better advice, can you share blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

The vast majority of people with an underactive thyroid condition can achieve optimal results with the correct dosage of Levothyroxine. I’m surprised you were not prescribed this medication first. It is also vital to have optimal key vitamins; so do check these.

Olives201 profile image
Olives201 in reply to Buddy195

As explained the only information I have from the doctor is the information in the original post. SlowDragon has advised on blood tests through BH so will get those done. I was quite surprised when they didn't put me on Levothyroxine. Trying to work out a plan of what to do next/how to find a specialist that can help!

Buddy195 profile image
Buddy195Administrator in reply to Olives201

Do post your BH results when you have them. As well as the TUK list of practitioners that I know you have already (via PM), you can ask for an endo recommendation in your area in a new post. Admin will then close this new post to replies, as per forum guidelines.

Olives201 profile image
Olives201 in reply to Buddy195

Thank you so much! Will do!

greygoose profile image
greygoose

Hi Olives201, welcome to the forum. :)

your free T3 was a bit low at 3.64, just below the reference range.

They were my results before I started, the numbers aren't bad but my symptoms are bad

If your FT3 was below range, it was absolutely dire! Not surprising you had bad symptoms.

They said if I feel okay on 45mg and am still not having bowel movements then I can up it to 60mg

From 45 to 60 in one go? This GP doesn't have the slightest idea what he's doing. He knows nothing about thyroid. You stay with him at your own risk because he's likely to make you very ill.

I think you mean 'mcg', not 'mg', don't you? :)

Olives201 profile image
Olives201 in reply to greygoose

Yes sorry I meant mcg. I have no knowledge about thyroid which is why I joined the group to get a second opinion. They have been the only person willing to do tests after 2 years of wondering what is wrong but now I am feeling that they are not specialised in this area and wanted some advice on what to do next/how to find the right person to treat!

greygoose profile image
greygoose in reply to Olives201

Well, we all start out with no knowledge - why would we have any? Doctors are supposed to know all about it, but they don't. We all have to start learning somewhere. :)

But this person really sounds dangerous, so the sooner your find someone else the better. Thyroid specialist are a very rare breed, but you can do better than this. In the meantime, start reading! Read on here very day, you'll learn a lot. And, ask questions. You can never ask too many of those. Even if it sounds like a silly question, ask it anyway. There will always be someone here to answer. :)

Olives201 profile image
Olives201 in reply to greygoose

Thank you! Yes feeling so overwhelmed about what to do next or how to go about anything. Don't know whether to do my own bloods before I see anyone else!

Hedgeree profile image
Hedgeree in reply to Olives201

Yes best to get your own bloods done before seeing anyone else.

greygoose profile image
greygoose in reply to Olives201

I agree, get your own bloods done because that way you can get full thyroid testing:

TSH

FT4

FT3

and nutrients: vit D, vit B12, folate and ferritin.

It sounds as if you have low stomach acid - most hypos have - so your nutrients are goind to be low, and that will make everything worse. To see if you have low stomach acid, try the burp test, you drink half a glass (4 ounces) of cold water with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don't have enough stomach acid.To see if you have low stomach acid, try the burp test, you drink half a glass (4 ounces) of cold water with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don't have enough stomach acid.

Olives201 profile image
Olives201 in reply to greygoose

I am already taking betaine hcl pepsin and have been for a few months after doing the burp test.

If I am doing my own blood test do I still take the t3 for the test or do I pause taking it?

Thank you

greygoose profile image
greygoose in reply to Olives201

When preparing for a blood test you should take your levo 24 hours before the blood draw, and the last dose of T3 8 to 12 hours before the blood draw. Have the blood draw before 9 am and fast over-night.

Good that you're taking betaine hcl pepsin but you still need to keep a close eye on those nutrient levels. :)

Den_And profile image
Den_And

I’ve been suffering from stomach issues for several months (bloating, constipation, etc). This following a time when TSH has been low (below range) and T4 & T3 high. Just had an endoscopy & had confirmed that I’ve got gastritis (severe inflammation of stomach lining). On 40mg of omporozole for a couple of months to sort. No ones absolutely sure the thyroid levels are causing stomach issue but I believe they are.

Get your GP to send you for an endoscopy. Also as others have mentioned I think you should be on levothyroxine (T4) rather than T3.

Olives201 profile image
Olives201 in reply to Den_And

Thank you - I gave up on my NHS doctor as they told me that is was stress and I just needed to take laxatives. I have been seeing a private FM so not sure I can get a referral for an endoscopy through them.

Feeling really overwhelmed about what to do next/who to see/how to go about it/whether to do a blood test through BH before seeing anyone else!

serenfach profile image
serenfach

Well you sort of came in the back door to get your diagnosis and treatment. Most of us go to our GPs for the diagnosis (which can take some time). Everybody is then treated with Levothyroxine, started at a low dose and increasing over time according to the test results every three months or so.

I would get a private blood test first, and then go and see a GP with these in hand. Some GPs dont like private tests, but nearly all NHS blood tests are private now. Going through the back door does not seem to have done you any favours, so nip round the front and try that way. The back door is still open of course if your GP does not help.

Come back with the test results, plus vitamins, and we can help further. The knowledge and support here is just brilliant, taking away that lonely and overwhelmed feeling, and seeing a way forward. Sending a hug.

Olives201 profile image
Olives201 in reply to serenfach

My reason for going the way I did is that my GP wont do anything about it I have tried for 2 years before giving up, hence why I went the route I did. The GP doesn't want to know! Everytime they just tell me it is stress and to take laxatives and that theres nothing wrong. Its too demoralising to try again, it really took it's toll on me mentally and physically. Even saw a private GP and they told me the same.

Certainly will. Thank you, that is really kind.

MissMonty profile image
MissMonty in reply to Olives201

Hi Olives201. I had an almost identical response from my GP, saying my symptoms were all in my head and to take laxatives. I struggled for a long time, feeling extremely ill, before being put on NDT by a private thyroid specialist. We are unable to post names of doctors publicly, but if you would like the name of the dr/thyroid clinic I had success woth please message me. The clinic is listed on the list provided by Thyroid UK.

serenfach profile image
serenfach

Ah, I understand. I wish I had found a back door now! What is it with GPs that they have this hatred of thyroid problems? The vast majority of us here are here because we have been let down by these "professionals", felt lost and ill. Is it because they know they dont know about the thyroid, dont care or just ignorance? Whatever, this forum for me has literally been a life saver. It should not be like that, we are ill and should be supported by the medical profession but we are not.

I occasionally just come here and have a rant about the ignorance of the GPs just to get it off my chest and it helps so much! Keep going now you have our support - you will get there!

Mednews4 profile image
Mednews4 in reply to serenfach

yes to all on this post. The constipation is the worst and I also have been down the road with colonoscopies (plural), endoscopy, heart monitor and heart CcTA and even when my TSH range was double over normal high range - they told me you’re okay. Take a statin or an SSRI. Finally am back on path with a Nurse Practioner who know her stuff and listens. This site has been amazing.

Just curious when the constipation subsides. Still work out dosage of levoxyl and T3. Hoping maybe in next 5 weeks with introduction of T3 it gets better but she reduced my T4 to introduce T3 (she had doubled me in t4 to begin with to get me back in range under 1 and it helped a lot but the other symptom of c (diagnosed as IBS-C by gastro without looking at my thyroid tests) yes - I think it’s all thyroid.

serenfach profile image
serenfach

Well as the thyroid hormones drive everything in the body, hopefully when yours are right for you, the gut will be working as it should/

I do wonder how much money is wasted on other tests before they get round to doing the TSH, let alone the T3! Such a waste of time and money, but in the meantime you are getting sicker!

Olives201 profile image
Olives201 in reply to serenfach

Fingers crossed!

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