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Original poster

Thyroid - so fed up with battling

28 replies

TheGoodEnoughWife · 11/09/2016 08:53

Hi, I have the auto immune under active thyroid (something beginning with H - can't remember actual name!) and have for about 9yrs. Was on 75mcg a day but have been having symptoms for last three years of being under active - hair loss, difficulty losing weight, tiredness, low mood, joint pain (only found this was a symptom after reading things on here).
I had been going to the doctors and having it tested and would phone for results and be told normal. When I eventually, again after reading in here, asked what it was/has been I was told it has been 10.4-11.8ish. Which I now know to be really low.

I already feel really down that I have been left with symptoms and just been told it is normal - surely results should be taken in account along with symptoms? If I was without symptoms then I could understand the fob off with 'normal' but I wasn't.

Anyway I spoke to two different doctors who both said they find patients function better if they are high teens, and after a test in Feb and me crying down the phone the doctor agreed to up me to 100mcg.

Just been tested again, still have symptoms, and been told 'normal' - result was 13! Other one was 2.4.

I just feel so frustrated that I am battling to just feel normal.

I asked for a call back from doc and receptionist just said 'but the doctor has marked as normal', then said they were full for call backs and I should call on Monday.

I am thinking of asking for a referral to an endocrinologist or making a complaint to the practice manager?
Any advice on what to say to doctor or what to do now?
Thank you (apologies for long post!)

OP posts:
BombadierFritz · 11/09/2016 09:09

get a copy of a book called understanding thryoid disorders by anthony toft. you can buy it in chemists. its part of a series by.the bma.
take it to your gp
he clearly states that some patients will need tsh below 1 or even suppressed. yours is 2.4 so its normal for you to still be symptomatic

Davinaaddict · 11/09/2016 09:26

13 is way to high!!! You should be between 1-2 max if you're being treated. Are you gluten free? Some say that that helps to manage symptoms for those with Hashimotos. I don't have it (that I know of!), but have been battling with getting mine looked at further due to my symptoms and my TSH being borderline, so I've been reading up on the thyroid a bit.

I would also repost your message here - healthunlocked.com/thyroiduk/posts
Its a great forum with loads of people with a lot of experience battling GP's lack of support and treatment. Dr Myhill is really good for information as well as per pp.

thereinmadnesslies · 11/09/2016 09:32

Unfortunately you have to battle for everything. Every time you go to the GP you will need to argue with them for appropriate care.
When I phone for blood test results, the receptionist will say normal. I then ask them to tell me the actual result and the range (the range is important) and I write it all down. If my TSH levels have changed I tell them and ask for an appointment to discuss. Small changes can be really significant, eg the GP dismisses my TSH rising from 1 to 2, but to me that is the difference between coping and feeling like death.
Try the Stop the Thyroid Madness website for info on additional things to look at as well. Going gluten free has definitely helped me.
I think the worst thing about this bastard disease is that the brain fog and exhaustion make it hard to fight for appropriate care, but the only way you will get appropriate care is to continuously push your GP.

Original poster
TheGoodEnoughWife · 11/09/2016 09:32

13 is the one that should be within 11-19 (or 12-22 in some reports) not the one that should be nearer 1 so not that high! The one that should be nearer 1 is actually 2.4.
I am just learning that actually I can't trust the doctors and that I need to know what the figures mean and what they should be so apologies that I don't know the right terminology and my post could be confusing!

OP posts:
Original poster
TheGoodEnoughWife · 11/09/2016 09:43

Thank you for replies although depressing that my thoughts on a lack of understanding of the condition are true and that others are struggling for treatment.

I have felt an issue with gluten although I have been tested and found not to be celiac so interesting there.

Have ordered that book - thank you.

OP posts:
feetfirmlyofftheground · 11/09/2016 09:51

I have had hypothyroidism for 4 years and I'm now 24.

I was on levothyroxine for 2 years, and in that time I went from a healthy 9 stone to 12 stone. The doctors kept saying it was normal and kept telling me to watch my DIET AND EXERCISE (how I didn't kill them I don't know).

Then I joined all the thyroid support groups on Facebook (I can list them if you want me to) and they teach you about self medicating.

So I decided to give it a go (I mean what was going to be worse then sleeping in the daytime and gaining more weight?) so I ordered ThyroidS from the Internet it cost £40 for 1000 tablets. And then I took half a tablet in the morning and half a tablet in the afternoon and then worked my way up. I'm now 10 stone 5 and no longer sleep in the day, I feel more energetic and don't feel so bloody useless all the time!

I told my doctor - he just shrugged he didn't care as long as my labs were okay which they are :)

I can provide you with more information if your interested Smile

thereinmadnesslies · 11/09/2016 09:52

I tested negative for celiac too, but I had a six month period where I kept increasing my meds but just felt worse and worse. So I tried gluten free out of desperation and its helped loads - I've started coping on 7hrs sleep a night instead of 12 and I've lost weight. It takes several months to really see the effects. I said I would try it for 6m then evaluation. At the moment I've been GF for 4m but I intend to continue. Discuss it with your GP but the chances are they will know nothing about the link between thyroid and gluten.

Hedgehog80 · 11/09/2016 10:18

I have thyroid issues and have had to go private as my GP will not help me at all.
TSH at highest was 4.9. They class this as sub clinical so wouldn't treat despite me having positive test for antibodies (hashimotos) and many symptoms that have caused me a lot of distress. I never feel well and have been anaemic a lot due to heavy periods

They told me until TSH is "way over 5 at least" they won't treat me. I could in theory stop my tablets let it rise and get treated in the nhs but I'm too scared as I dont feel well currently and TSH is 2.6......I have four dcs who have various health problems to look after so I can't feel any worse
I think it's a very overlooked condition and it angers me as people don't appreciate how crap it can make you feel

booox · 11/09/2016 16:40

I've been at 2.5 and at 13. I'm on my knees at both tbh.

Agree re toft book and shove under their noses show the GP as it clearly explains why nearer 1 or just under is necessary if on thyroxine.

See how you are at that level for a good 3-6 months before trying anything else.

IWasSpartacus · 11/09/2016 21:15

When you have your bloods taken make sure you have not taken your levo that morning - take it after the blood test.

Themoleisdead · 11/09/2016 21:30

When you have your bloods taken make sure you have not taken your levo that morning - take it after the blood test.

This + I've also been told you should have the blood test first thing in the morning and not to have eaten or drunk anything except water.

FeedMeAndTellMeImPretty · 11/09/2016 21:55

Like Feetfirmly I self-medicate with help from a Stop the Thyroid Madness support group on FB. It's quite involved and you may need to spend some money on private tests as GPs are notoriously reluctant to order them.

I also take Thyroid S (4 grains a day instead of 100mcg of Levo thyroxine that I was prescribed). I haven't yet had a blood test but I feel better generally and don't have any hyper symptoms so I'm going to continue.

Sadly my DS has symptoms and his TSH is around 4.5 so not high enough to be treated and too young for me to be able to self-medicate so he is stuck with no treatment, aches and pains, excess weight, dry skin and disrupted digestion. Poor little bugger Sad

DragonRojo · 11/09/2016 22:05

Hedgehog80, what sort of private doctor did you see? I have had Hashimotos for at least 10 years. I have tried to find private help, but I ended up with a Nutritionist in London that I was not happy with. Would you mind sharing by PM or here?

Hedgehog80 · 11/09/2016 22:17

I went to the local BMI hospital and saw an endocrinologist
She was very helpful did bloods etc and wrote to the GP. They still won't help me but at least Iam under the care of a consultant and can get Levothyroxine. Private prescriptions are cheaper than nhs too

Themoleisdead · 11/09/2016 22:40

They still won't help me

Why is this? It makes me so angry. It took me over 2 years to get a diagnosis and I have had to change to part,time work as I can't cope with full time. The cost to the economy of not treating effectively must be more than it would be if people had proper treatment.

BombadierFritz · 11/09/2016 22:54

in all honesty I stopped taking meds altogether as I felt more shit half medicated than just not medicated at all. I also just work pt. i've lost the energy to even try the online stuff but maybe I will one day. I just couldnt bear more conversations about how I felt crap. I was apparently suppressed tsh but my t4 was never that high on 100mg. I weigh 80kg so 100 isnt much really. sigh. its shit.

DragonRojo · 12/09/2016 05:58

Thanks Hedgehog80. I am seeing the GP this week again and I will try to get a referral to endo again.

booox · 12/09/2016 10:53

You are allowed to request a referral to an endo.

They will want full bloods done which will spur the GP to do this.

Agree regarding blood test in the morning before thyroxine; a consultant told me this too.

But to be honest, the GP should be reading up on the literature. This is a simple GP thing.

Toft wrote guidance in the GP guidance magazine on this very subject. That tsh should be around 1 or just below. This can be gained from health unlocked, the thyroid uk group. (Or pm me and I can send once I've found it!)

The British thyroid foundation is the charitable wing of the thyroid association.

You could get in contact with them as they've been doing research on GP knowledge and might be able to give info on how to point GP in right direction. The best thing I ever did was join the BTF and buy the Toft book. I am fine in thyroxine; a very few people need t3 too. (Call btf for info on this)

75 is not enough!

You can even adjust dosages slightly eg I take 125 daily and an extra 25 (so 150) twice a week. My tsh is 0.8.

(By the way the btf are currently funding research into developing a combined t3 slow release and t4 pill which I believe is being trailed soon)

Effiewhaursmabaffies · 12/09/2016 11:30

Can you give me a reference for the blood test in the morning before thyroxin? Since I have had to switch brands I have had problems with instability in my blood tests. But my blood tests have been in the morning about 1 hour after taking the thyroxin and maybe that could be the problem.

booox · 12/09/2016 11:37

To be honest it's being consistent for you yourself and tracking your symptoms that is the important thing.

But, if you take thyroxine first thing, you will have more t4 in your system. So tsh might be around 0.5 which might be just ok and t4 be too high.

I don't have a ref other than a scribbled note at a BTF meeting a few years ago!

booox · 12/09/2016 11:39

Talk to the pharmacist about brands as there was a big issue a few years ago with TEVA and their 100mcg. It was with drawn as wasn't correct.

They are supposed to be keeping a closer eye on it but any issues are worth reporting incase others are getting the same and it's a batch issue.

sparechange · 12/09/2016 11:57

Just a warning for everyone here currently on Thyroxine and therefore getting a prescription exemption certificate...

I've just had a massive fight with my GP to renew my exemption. She said that there are currently discussions about whether thyroid issues should be removed from the list of conditions which qualify for prescription exemption certs, and a decision is going to be made 'soon'.
She therefore didn't want to give me a certificate now if I wouldn't be eligible for one in a few months time, but I managed to talk her about.

But anyone with an exemption card which is running out soon might want to renew it soon in case they remove your eligibility...

booox · 12/09/2016 13:33

Shit no way!!!!?!

booox · 12/09/2016 13:46

I found this from 2009, page 16. I wonder if they're thinking of changing it to just thyroxine.

https://www.gov.uk/government/uploads/system/uploads/attachmentdata/file/213884/dhh_116367.pdf

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