Should I push for an ultrasound of my thyroid? I have primary hypothyroidism without Hashimoto's...

[melissa-b]

Hi guys, I'm back! 4 months ago I asked to go up on my dosage of levothyroxine (I was on 50mcg) but the GP declined. However, I had a blood test again yesterday and my TSH has gone up more, and my T4 dropped more, so they are letting me go onto 75mcg - result! As of the last blood test (yesterday), my TSH is 6.73mIU/L (range 0.38-5.33) and my T4 is 12.4pmol/L (range 8-18.0). I'm going to start the 75mcg tomorrow. My other vitamins and minerals are looking good, and I'm still taking supplements, but my potassium was a bit on the low side (3.5mmol/L with a range 3.5-5.3).

However, I've been taking Mercury pharma 25mcg twice a day - I tried another brand of 50mcg (I can't remember which one!) and broke out in an itchy rash all over my body, so had to take two 25mcg Mercury ones instead. I don't know if I should take three Mercury pharma tablets or get the new 75mcg ones the GP has sent to the pharmacy, as I don't want to get a rash again but taking three tablets is a bit annoying as I also have some joint issues - do people who have taken Mercury get on well with any other brands?

Additionally - lately, I've been having even more symptoms of hypothyroidism (not surprising seeing my TSH getting higher and higher) - extreme fatigue, joint pain, thinning eyebrows, weight gain, high blood pressure (diastolic), but also a hoarse voice and pressure on and around my throat. This pressure is worse when I'm lying down flat on my back. It's been getting worse over the past 6 months or so. Should I ask my GP for a referral for an ultrasound on my thyroid? I don't think I have a goitre or anything. I tested negative for Hashimoto's so I'm not sure why my thyroid is failing. Thank you!

[FancyPants54]

There's more than one antibody to test but the NHS usually one do one of them unless you push for both. You can be negative in one and positive in another thus Hashimoto's can be the cause. Some never have antibodies show up on tests but it can still be hashimotos.

I am not surprised you have symptoms. Being kept on a 50mcg starter dose is ridiculous. And now your blood test has proved it. We should be aiming for a TSH around 1 or below. Trouble is our doctors often don't agree.

I can't remember which manufacturer produces 75mcg tablets. There's only one I think. It might be Teva. I would ring the surgery back and request to have your increase provided by a 25mcg tablet and a 50 tablet. Then you could have both from Mercury.

[melissa-b in reply to FancyPants54]

Thank you for your comment! I had private tests which had Thyroglobulin Antibodies and Thyroid Peroxidase Antibodies that were negative (as well as negative ANA and CRP), a couple of times, so I'm guessing it isn't Hashimoto's - but I wondered if anything structurally could be going on with the pressure on my throat! I agree - I'm hoping to get my TSH to 1 or under, it's never been close! I'll ask my pharmacist about that and find out - I didn't know Mercury did 50mcg tablets, either!

[FancyPants54 in reply to melissa-b]

Most brands do 50's. It's the 75's that are limited. Probably because most people are only transitioning at the 75mcg point, likely to end up on higher so it's no worth the manufacturers producing the tablet.

You can ask for a scan. I have had one. But I got told off when I turned up for it as the person who was doing it said I was taking up a space and it wasn't necessary. My thyroid has shrunk because I've been taking medication for years. But I felt so small being told off for wasting his time like that.

[melissa-b in reply to FancyPants54]

I'm so sorry to hear about your experience, that sounds dreadful <3 I'm a bit concerned about the same thing ☹️

[helvella Administrator in reply to melissa-b]

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc. PLUS how to write prescriptions in Appendix F.

dropbox.com/s/bo2jzxucgp9hl...

Screenshot of levothyroxine matrix

[melissa-b in reply to helvella]

Thank you for this doc! Looks like Mercury does 50 and 75, I don't know why they're making me take 25mcg 😆 And i found from my notes, it was Accord that made me extremely itchy, so at least I can avoid that. I also saw that in New Zealand (I think), Mercury Pharma isn't being used (for new patients) as it didn't show it had bioequivalence... Interesting

EDIT - I read the wrong part of the document, Mercury is indeed only available as 25mcg tablets!

[helvella Administrator in reply to melissa-b]

No! Mercury do 25, 50 and 100.

There are a few countries in which it is accepted that not all makes are equivalent.

[melissa-b in reply to helvella]

Oh how strange, I'll speak to the pharmacist about that then! Although I would prefer to take just one 75mcg tablet - do you recommend one make above another? Or should I look at the fillers in Accord and make sure whatever I take doesn't have the same ones? Thank you

[helvella Administrator in reply to melissa-b]

If you do not have a known issue with any of the excipients, then it seems very much a matter of luck.

Getting two tablets (e.g. 50 + 25) does give you more flexibility in that you can stick with the same product on doses of 50, 75 or 100 and, if you add in either alternate day dosing or splitting, 67.5 and 82.5 as well!

And if you go chasing one particular product, but none of your local pharmacies regularly handle it, you are setting yourself up to have supply problems. We have seen this sort of problem many times when pharmacies change what they supply - which is bad enough. And not something you can predict.

[Dollyrocker000 in reply to melissa-b]

Hi, I’m a Melissa B too! I have been advised by my dr that a scan is always necessary to 100% rule out Hashimotos

[Moye75]

The problem is, many people with hypothyroidism have inflammation which causes reduced T4 to T3 conversion and increased amounts of reverse T3 and so they don’t actually feel better. The normal range of TSH is ridiculous and many people say they feel better around 1 but GPs don’t care how you feel, as long as you are in the normal range. I had to fight to get mine increased and went in with quotes from the GP Notebook site, which is a reference site for GPs. I started taking guggal to help with conversion and as well as losing a bit of weight, my tsh has reduced but you can’t always go by the numbers. Apparently a small % of people have hashimotos with negative antibodies, sometimes due to it being early in their journey, other times due to have a less aggressive form. Remember to fast for any thyroid tests, they don’t tell you to but everyone knows it makes a difference. I didn’t for the first one and they declined treatment and then I did a private test and fasted and they finally accepted I had it and prescribed me medication.

[Brightness14]

What about your FT3 results that's the important one, if low it can cause many of the symptoms that you describe.

[melissa-b in reply to Brightness14]

my T3 was tested a couple of times and was at a good level! I just wondered if I should ask for an ultrasound

[Brightness14 in reply to melissa-b]

I certainly would ask for one especially with the lying down problem, good luck.

[melissa-b in reply to Brightness14]

Thank you, I will!! <3

[Hedgeree]

Hi melissa-b,

I would push for an ultrasound.

If you describe your symptoms to your GP emphasise that they are increasing and have got worse over the last few months; that the pressure in your throat is worse when you're lying down flat on your back.

They should refer you.

I had very similar symptoms. It was only after an ultrasound that a multinodular goitre was found. I'm not saying you have a goitre but it would be a good idea to get an ultrasound to rule it out.

[melissa-b in reply to Hedgeree]

Thank you so much, this is definitely what I’m wondering about! I’ll ask and if they say no, I will look into a private scan depending how much it costs. Thank you and I hope you are well 💗

[Ontherun81]

Hi melissa-b

I would definitely push for a Thyroid scan as a certain percentage of low Thyroid sufferers have Thyroid nodules that grow on the Thyroid gland causing pressure on the oesophagus. I had 2 definitely possibly 3 at my scan, I had a terrible horse voice, couldn't swallow etc, you don't always get a goitre. 18 months on after a scan on parathyroid glands to see whether these tiny glands or the nodules were causing swollen joints, muscle spasms etc, extreme fatigue, I found out the nodules have gone but so has my Thyroid gland! It's virtually non existent. Currently on 125mg Levothyroxine until I see Endocrinologist end of October. Sometimes the nodules can be cancerous so definitely push your GP for a scan.

Good Luck let us know how you get on xx

[melissa-b in reply to Ontherun81]

Thank you so much, I've booked in a F2F appointment with my GP and I will ask for one! <3

[Ontherun81 in reply to melissa-b]

Brilliant! Don't let things ride like I have done, no one likes to feel a nuscience, or feel like a drama queen, but I now make myself insist on action, the GPs see hundreds if patientsso i dont expect them to pick everything up, but if you dont ask you wont get! Stick to your guns these things should not be left.

Good luck let us know how it goes xx

[melissa-b in reply to Ontherun81]

Thank you so much 💟 I will! I hope you are feeling okay, too - sounds like a lot to deal with!! xx

[Ontherun81 in reply to melissa-b]

👍😉💕xx