Who manages your hypothyroidism?

(33 Posts)
Fluffycloudland77 Tue 03-Mar-20 10:54:36

Dh has to see a general medicine consultant every 9 months or so.

Is this normal?.

OP’s posts: |
thereinmadnesslies Tue 03-Mar-20 10:57:45

Me. My GP is clueless and I get sent a blood test form annually which is reviewed by whatever random doctor, I only get a call if they think I’m overmedicated but never if I’m under medicated 🤔. would be great to have a regular consultant appointment.

CrumblyMumbly Tue 03-Mar-20 11:02:14

Also me. Gave up with my GP as he left me on a tiny dose of med for 2 years. Each time I had an appointment to tell him how ill I was feeling, he fobbed me off. I pay for my own private tests, get a lot of great advice from Thyroid UK and get my own meds. I feel so much better and in control.

AutumnCrow Tue 03-Mar-20 11:04:33

Same as @thereinmadnesslies. Useless GP, so I have to remind her every year that I'm supposed to have a blood test. I then have the blood test, and never hear another word.

I'm currently in the process of trying to get access to my full medical records, not least because I feel like shit.

VirtualHamster Tue 03-Mar-20 11:07:40

I have an annual blood test and a medication review from the GP.

After being on the same dose for 10+years a new GP to the practice decided i was overmedicated and reduced my dose, no consultation just a different prescription when i went to pick it up. Eight weeks later my blood test showed that I was undermedicated.

moonlight1705 Tue 03-Mar-20 11:09:32

Me, I was under a consultant when I was pregnant and she boosted up the medication massively. Apparently GPs are only allowed to add or take away up to 25mg of levothyroxine each time so it may take forever to get to the right dose.

I refused to go back down after pregnancy as my TSH was finally under 1 which made me feel so much better.

KatharinaRosalie Tue 03-Mar-20 11:11:17

Yes, me. I ask for blood test and check the results, and ask for adjusted dosage if needed.


seekingwaxwings Tue 03-Mar-20 11:13:32

My GP calls me in for blood test when they can be bothered, I recently had to push for my dose to be increased as I was feeling dreadful and my results were 'borderline'. GP initially wanted me to just have another blood test in 3 months.

Crumbly I'm very interested in what you say, can you tell us more please? How did you go about the private blood test, how much was it, and where do you get your medication - is it different to what the nhs prescribe? Thanks

justilou1 Tue 03-Mar-20 11:16:48

Me... I know my symptoms. I discuss with my GP (luckily awesome human being who knows that I am not an idiot.) We titrate the dosage accordingly. (Higher dose in the winter usually.)

Onceuponatimethen Tue 03-Mar-20 11:18:28


NaToth Tue 03-Mar-20 12:18:22

Also me. ThyroidUK probably saved my life.

I have secondary hypothyroidism, but GPs still dose by TSH, which is contrary to guidelines.

I remind them every now and then that I am hypothyroid and am entitled to a blood test every year, but I don't get anything else from them.

tobee Tue 03-Mar-20 17:34:30

My gp surgery do my annual bloods and review my medications. I always phone preemptively to book because I want to be in control so don't know what would happen if o didn't do this. Or how quickly someone would contact me to retest.

Floralnomad Tue 03-Mar-20 17:39:28

Primarily me , but I do have access to an endocrinologist because of my other issues if I feel i need anything adjusting . I generally have my bloods done through the GP every 6 months at my request as I have other health conditions .

Khione Tue 03-Mar-20 18:47:18

I do.
I have my annual blood test but in addition to what the GP is allowed to prescribe I also take T3 that I buy in Turkey. I have to stop taking it for about a week before my test or the GP who is reviewing tries to drop my Thyroxine.

My own GP know what I do and says 'I can't condone it but it doesn't seem to be doing you any harm'

T3 is rarely prescribed in the UK as it costs the NHS a small fortune. In Turkey it costs around £3.00 for 3 months supply.

aWeaponCalledtheWord Tue 03-Mar-20 20:03:40

i have an ENT consultant as i have a massive substernal goitre which needs a fairly major surgery to remove. i get my bloods done fortnightly, my GP surgery contacts me if there’s any change to my medication needed.

i fucking hate my thyroid. it’s huge, squishes my trachea to the side and tries to suffocate me in my sleep! can’t wait for the op.

Mrsorganmorgan Tue 03-Mar-20 22:21:35

Me, I also use Thyroid UK and it is a very helpful site. I used to see a private doctor who unfortunately has died. I order Synthroid from International Pharmacy in USA. Costs about £200 for 3 months supply. I also pay for private blood tests.

My GP was useless and told me to take up Yoga when I could barely move let alone sit on the floor. I was so ill and gained 3 stone in weight

GrumpyHoonMain Tue 03-Mar-20 22:22:48

I am about to refer myself to an endo

FairyJuice Tue 03-Mar-20 22:27:38

I book bloods with my gp every 6 months, or more often if I'm symptomatic. My gp is quite good thankfully. I got referred to an endocrinologist during my third pregnancy and saw them once (didn't get the appointment til after the baby was born), they didn't do anything for me except tell me to get in touch for another appointment if I was having any problems in the future hmm

I live in Ireland though so have to pay for GP visits/blood tests etc.

PurpleFrames Tue 03-Mar-20 22:29:45

Blood test at the GP- get yearly text reminders

PrimalLass Tue 03-Mar-20 22:32:55

Haven't had a blood test for 2 years and I buy NDT from Thailand over the internet. Diagnosed 20 years ago.

Nat6999 Wed 04-Mar-20 03:42:07

I've only been on Levothyroxine for 4 months after years of being classed as borderline, they are still playing with the dose at the moment, I'm up to 75mg. I have a blood test every 8 weeks until they decide finally one regular dose. It took my hair falling out & losing most of my eyebrows to even get them to agree to try me on Thyroxine.

Onceuponatimethen Wed 04-Mar-20 06:18:06

@Nat6999 I also lost some of my eyebrows in my early 30s. The whole diagnostic approach to thyroid conditions is poor IME. I’m sorry this happened to you too

KatharinaRosalie Wed 04-Mar-20 15:57:22

My GP was useless and told me to take up Yoga

My GPs solution for me being hyper due to being overmedicated was 'relax and don't stress'..

OhTheRoses Wed 04-Mar-20 22:26:49

25 years ago when pg with ds the hospital didn't test my tsh deapite my requests. T4 every time until I was 35 weeks when my tsh was over 4.5. I realised by the time ds was about 6 weeks that I had barely any eyebrows and no hairs on my arms. Never came back. Is this an actual thing - I thought it was the shock of labour.

PelicanPie Wed 04-Mar-20 22:43:22

These accounts are awful. I have yearly blood tests. However several times I have been told I am taking too much thyroxine and the dose is reduced. I then feel appalling. I was referred to an endo at my request. She told me the dose was fine. When I asked why I had been told I was taking too much she didn’t really have an answer.
I just have no faith in doctors anymore due to a whole series of situations .
I would like to know why people are buying alternative medication abroad. What does it do that thyroxine doesn’t?

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