Under active thyroid - newly diagnosed

[Inyourwildestdreams]

Hello!

I hope you don’t mind me starting a new thread - I didn’t want to jump in on anyone else’s thyroid ones as they were a bit different 😊

Blood test (taken due to a case of extreme hives and swollen lips lasting 7 days) showed a TSH level of 5.02. Dr suggested retesting in 3 months which has been done and TSH is now 7.91. I’m not very clued up on the condition yet so don’t know the ins and outs but was told “all other levels are showing as normal and stable”.

No thyroid issues previously but now looking into it I’ve had so many symptoms over the last 18m or so that I just put down to me being really busy and run down with young DC and a busy routine.

I’ve been prescribed Levothyroxine (25). Can anyone tell me how long it was until they started noticing any differences? I’m assuming it’ll take a while to get the dosage correct etc but did you notice any difference even at a lower starting dose?
I’ve been advised it’s to be taken first thing in the morning on an empty stomach then not to eat for 2 hours afterwards which is meaning in having to skip breakfast completely and I’m feeling a bit hangry in the mornings. Is the full 2h wait really necessary? Obviously I’m trying to do everything “by the book” while things are figured out!

Currently have more bloods away being tested for autoimmune antibodies (? I think!) - would this then be Hashimotos? I’m still trying to get my head round all the information. And to test for coeliac disease - is coeliac common with thyroid issues?

Appreciate any advice or information people can give 😊

Im glad I've found this thread. Can someone who understands thyroid malfunction tell me what the following results mean please ? Serum TSH 5.9, serum free T4 20.2. According
I'm on 75mcg of Levo thyroxin (it was 100mcg but gp reduced it), my vit D is too low, my folates are low (so I'm now on folic acid), my heart rate is all over the place (I do have SVT which I'm medicated for) but it does seem to feel like it's getting worse as I've been tracking it on an Oura ring.
I do take all my medications together in a morning but I'm not very consistent on time which it seems like I need to improve.

You haven't given ranges for FT4 but on the basis of the usual ranges I see, your FT4 is high in the range, however your TSH is way too high. So that means in all likelihood you aren't converting your FT4 into the active thyroid hormone FT3. You'd need to have that measured in order to find out for sure. However with an FT4 that high you won't get an increase in Levo and getting T3 prescribed is difficult if not impossible for many.

I think the best way forward is to do a home finger prick blood test (such as Medichecks offers, but other companies do it too) that measures TSH, FT4 and FT3. Then you will get the full picture. Also it's pretty standard for hypothyroid patients to have low Vit D, folate and B12.

If you are taking Vit D3 then please take it with your main meal as it needs fats to properly absorb it, also consider taking it in combo with Vit K2 (probably 100 mcg).

If your FT3 does turn out to be low then you really need to have some T3 (liothyronine) as well as Levo, but as I said before, it can be very hard to get it prescribed.

Is the advice the same for an overactive @CrunchyCarrot these were my results in May
TSH (Thyroid-Stimulating Hormone): <0.05 mIU/L (reference range: 0.4 - 5.1 mIU/L) fT4 (Free Thyroxine): 23 pmol/L (reference range: 9 - 19 pmol/L) fT3 (Free Triiodothyronine): 7 pmol/L (reference range: 2.4 - 6 pmol/L)

Not seen anyone about it and on 10mg propranonol x3 but still highly anxious, racing heart, huge fatigue. Having b12 shots (last today) which has lifted me very slightly but am taking spatone, zinc, magnesium with B3 and B6, mouth spray D3, mouth spray Iron and mouth spray B12 (levels were 140 and low end of range was 400 IIRC so I am aware injections won't take me half way into range) - I had an PE in Jan and was on thinners so told to stay of Vit K, only on thinners 3 months so came off about 2 weeks before starting beta blockers for hyperthyroid, but no other meds. Muscle has halved since Sept (when I began feeling unwell) and water and protein in body has gone up instead.

I have managed to persuade them to give another blood test for coeliac and to check which iron deficiencies/any other I have as calcium was also on the line but I can't eat because of nausea which isn't helping the deficiencies. They keep trying to CT but can't because thyroid isn't treated...Any advice on how to feel less terrible would be appreciated.

I'm sorry to hear you have been so unwell! An overactive thyroid is basically treated by bringing your thyroid hormone production down (often by using carbimazole) and as a by-product your TSH would rise. Yes that does put a different interpretation on your results.

So your FT4 is still pretty high although now inside the normal range (which is likely why your FT3 hasn't been tested again). You can feel truly dreadful with an overactive thyroid, for sure. My mother had Graves' disease (which is basically the autoimmune version). Have you had TRAb antibodies tested? Your thyroid should be treated properly, you shouldn't be left to feel ill.

I think your main priority is to get your antibodies tested to see whether you do have an autoimmune disease (Graves') and to get your thyroid treated properly. You don't want to keep living with it untreated, I've seen what that can do first hand, sadly.

@CrunchyCarrot thanks - it just feels like they have just left me to be honest. I had to push for the antibodies bloods and coeliac - not got bloods for that until 17th - so will be end of that week until the results. I just don't understand why they won't give me anything for it? It feels like they want it to get worse? Me not being able to eat is worrying but I do wonder if it would improve if they actually gave me some treatment. It certainly isn't helping the anxiety and hypertension it is causing (have beta blockers thankfully but need a stronger dose!). I don't see what else I can do though? Is it worth doing an at home test for the auto as it might be quicker?

Me too

25mcg is a starting dose for someone elderly or with heart problems. Normal starting dose is 50 mcg. Unless those issues apply to you I'd ask GP to check nice guidelines as your starting dose seems too low. You often feel worse after you starting levo and it takes 6-8 weeks on a dose before your dose is increased so starting you on 25 is delaying the whole process by a couple of months. It's not necessary. Most people need cat least 100mcg a day once fully titrated.

And you definitely don't need to wait 2 hours after eating in the morning.30 mins to an hour is sufficient. You shouldn't take any other medication or supplements within 4 hours of taking your levo though to avoid absorption issues with some meds and supplements.

When you retest, take your levo 24 hrs before your test. Book your test for as early as possible in the morning and don't eat or drink beforehand (water is ok). This ensures you are taking the test when your TSH is at its highest in the day (it fluctuates throughout the day on a cycle) and it also ensures that you are taking your test in the same conditions each time so making the tests more comparable.

I once had two tests done in one day. One first thing in AM, a second later in the day after I'd eaten and my TSH differed by nearly two whole points.

If you are taking biotin, stop this for at lest a week before testing as biotin affects any immunoassay blood test and that can include thyroid blood tests.

To feel well most people who are medicated need their TSH to be around one. If your GP wants to stop increasing because your TSH is in range but you don't feel well, see another GP. Ime you may need to go through a few before you find someone that knows what they are doing.

Lots of people do very well just on levo. Some don't (like me) and need other thyroid medication to feel well. So do look into alternatives if you feel that levo isn't working for you.

I would strongly recommend going onto the Thyroid U.K. website and having cases and also signing up to the Thyroid U.K. forum on Health Unlocked. You will get a lot of great advice there.

Good luck.

There is no way you need to be left for 3 months. 6-8 weeks is all that's needed to see what levo is going to do to your thyroid levels. Can you see a different GP?

I see an excellent endocrinologist. He's in the SE, not London. But I always "see" him over video or phone anyway. PM me if you'd like his details.

@AbraAbraCadabra Thank you, your posts are really helpful 😊 I spoke to GP again the other day. She phoned to confirm Hashimotos. Phonecall was less than 2 minutes and she gave absolutely no other information other than “your results came back high so we’d say it’s Hashimotos. It doesn’t change anything but it’s good to know. So we’ll check levels again at the 3 month stage” 😔
I did question the low dose and the 3 months because I feel 10x worse since starting the medication (it’s now been just over 2 weeks), but her response was “I’m not surprised to hear that, it is a low dose but we’ll follow the 3 months and see how we go” 🙄

There isn't much in the way of explanation of any of it online either, which is why I think it feels so daunting when you don't have a face to face with anyone about it.

In my notes today (on the app) the radiologist from the cancelled CT said he can "see" I am meant to be on carbimazole and when that is established to re-book! There is no other mention of this on my app and I don't have a prescription but this was dated yesterday. I'm trying to see if I can get it over the weekend by emailing - I want to start medication ASAP! Having to do so much sleuthing can't be normal.

OP I hope you get some more information, thank you to the helpful posters on the thread.

I'm 5ft 10 and my haematology consultant rang my GP and asked if they were treating thyroids with homeopathy now or could I perhaps have a decent dose I love him
Changed doctors and now on 100mcg

@buffyslayer is that a typo in your post, or does height have a bearing on dosage? I am 5’ 6” and take 100mcg one day, then 125mcg the next, alternating. I have always taken my tablets first thing in the morning, with coffee and breakfast?

Not a typo! It is technically supposed to go off weight and then obviously monitoring TSH

They had given me the starting dose for a small elderly person, which the consultant said was ridiculous as I'm tall and heavy
Basically 25mcg was a drop in the ocean

Sorry to revisit this but some reassurance I'm doing the right thing would be welcomed please.
I had bloods done on Monday. Serum TSH has come back at 8.77, out of range. It was 5.9 in April. This is the only result I can see re thyroid. Doctors phone appt to discuss was set as 12/9. I'll be on holiday so rang to change it and it was pushed back to 24/9 !
I went to the docs due to sudden shortness of breath and wheezing. Chest X-ray done. All clear.
I'm wondering if it's all to do with my thyroid being out so I want to increase my thyroxin dose from 75mcg to 100mcg now rather than wait until 24/9. Would you do this ?

I'm on 75 at the moment as 100 (my starting dose) was making me run hyper and have palpitations.

The chemist advice on the label is to take it first thing, 30-60 minutes before any food or caffeine. I usually manage 20-30 minutes before I cave and drink tea!

I've been taking levothyroxive for 6 years. Told to take 30 minutes before caffeine. Also, dobt take at the same time as iron - Dr didn't tell me this though!.

Honestly, I don't feel great still. Still exhausted. My hair has stopped falling out though. Weight gain continues, I honestly think I'd have to starve myself to lose weight.

I’ve had an under-active thyroid for 15 years..
I’ve literally doubled in weight and Im permanently exhausted.. I need a good 10 hours sleep per night (but obvs that never happens) if i have a minute less than 7 hours I feel ill…
Iv just been increased to 135 mgs of levo..
Had my full bloods done (privately as GP doesnt offer it) and Im in the ‘ok’ range but not optimum..
feeling fed up recently I did some research online (yes I know) but found several things I didn't know which private GP confirmed but my nhs doc never mentioned….

you should take thyroid meds on empty stomach. Preferably first thing and nothing after for 2 hours..
Vitamin tablets can counteract with levo so dont take them at the same time… you do need to take vit D though just not at the same time as the levo…

It really matters what your T3 is so if the doc only offers t4 and TSH then get a private t3 test (i think there are finger prick type ones )

if you havent got fat yet then really work at staying slimmer, I didnt and really regret it.. i hate my thyroid 😫

My doc was really good and listened when I said I thought the meds were not strong enough , she called me once after a consultation to ask was I taking them at all because from the bloods it appeared I wasn't. I take them first thing on empty stomach , wait an hour before I eat or drink. I'm currently on 100mg but I feel shit , so tired , weight gain brain fog . I dont think there's enough diet and supplement advice given with the diagnosis, my cholesterol is high no matter what I do I'm told change diet I did I lost 3 stone but cholesterol went up , then I was told nevermind it's your thyroid causing it . Weight went back on and I can't shift it now short of starving myself . It sucks

Sorry to hijack this post. How old is your dd @LoveRules and what other symptoms does/did she have? I've a DD I suspect has an underactive thyroid. I keep having private blood tests done for her and it feels like a waiting game for them to register as bad enough to have symptoms taken seriously and to be diagnosed. And if it is not her thyroid, why don't they investigate what it is causing these symptoms?!