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Do I need to push for thyroid medication?

16 replies

Shezlon · 02/06/2021 09:14

I've had a years-long debate with various GPs and an endocrinologist about my thyroid levels. They have been steadily worsening over the past 4-5 years but GP and endo are adamant they don't need to do anything (while acknowledging it will probably continue to get worse) until I hit the magical TSH number that prompts them to treat me.
I have pernicious anaemia so get yearly thyroid checks as I'm at higher risk of developing Hashimoto's. In January, which was actually the first check in a couple of years, TSH had gone up to 4.2 (range goes to 5.6) from 3ish at the previous one. NHS, so no further checks. I've just had a private test done, TSH was 5.85 and TGAB antibodies were 510 - normal range 0-115.
The irony is that I feel better than I have done for a while, I'm on top of my pernicious anaemia with twice-weekly injections. I have also had iron-deficiency anaemia recently so am taking ferrous fumarate and my ferritin is up to a really good level.
I'm fairly knackered but not crippingly tired like I have been. No other particular thyroid symptoms that I have noticed. I don't know if I can face going back to gp AGAIN to see if these numbers are bad enough for me to finally be treated. Would it make much difference? They historically get really pissy about private blood results and wouldn't take them into account without repeating the tests themselves. And they won't test for antibodies unless my TSH is over the range.

OP posts:
Shezlon · 03/06/2021 12:47

Hopeful bump for anyone who knows about thyroids!

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Chailatteplease · 03/06/2021 13:01

Join Thyroid UK for help with this OP. You probably will have to push for treatment, I did.

Shezlon · 03/06/2021 13:18

Thank you chailatteplease (my favourite drink incidentally!)
I am on there from the start of this process years back but from my experience the answer there is always - push for treatment. I'm wondering if I should, even without particular thyroid symptoms? I've pushed in the past, hard, and got nowhere but I felt very much worse then than I do now (when I was just starting out on the pernicious anaemia treatment) so ironically now is the time I'm feeling ok - right when the numbers have deteriorated!

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Smolgoose · 03/06/2021 15:33

I'm currently in the process of trying to get treatment for high TSH / low T4, but I am very symptomatic so am pushing for treatment.

I think the sensible thing in this situation is to go on symptoms, and if you start feeling worse go back and pursue treatment again.
However, if you are TTC or planning to soon, it's worth doing some research and pushing for treatment, as from what I understand even a borderline under active thyroid can substantially reduce fertility and increase risk of misscarriage.

Also, keep up with the regular blood tests, as if and when you do pursue treatment, a record of results over time will help you. If you fall into subclinical range, NICE guidelines requires two blood tests at least 3 month apart for Gp to consider treatment

Procrastatron · 03/06/2021 16:27

Nice guidance isn’t prescriptive because people’s symptoms and the test results vary to much. I had symptoms at your level of TSH (and low T4) so was prescribed levothyroxine. The GP was clear that she was treating the symptoms not the numbers which is essentially what NICE say although they use a lot more words.

Shezlon · 03/06/2021 16:41

Thanks smolgoose, I'm menopausal so fertility definitely not an issue for me.
What is your TSH level if you don't mind me asking?

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Smolgoose · 03/06/2021 17:03

@shezlon my TSH was 7.5 and my T4 was 9. My GP is against treating until my TSH passes 10, so I'm just struggling on

Procrastatron · 03/06/2021 17:18

@Shezlon that is inconsistent with NICE guidance. You need a new GP. I was treated with much lower TSH and slightly higher T4.
What does your GP think will happen if they give you a bit of Levo? I’m so cross on your behalf.
You probably already know this but those numbers basically say that your pituitary gland is working extra hard to get your thyroid to produce not enough T4.
Gah!

QueenPaw · 03/06/2021 17:20

Mine was 7.5 and I had to push for 25mg of levo Hmm

Shezlon · 03/06/2021 18:05

What does your GP think will happen if they give you a bit of Levo

I had this exact conversation with the endocrinologist a few years back! She said taking Levo if you don't need it can give you palpitations and fatigue - at the time I had both of those symptoms anyway so didn't see how it could get worse. She was really useless, I came out of that appointment and sat in the car and just cried. My antibodies were raised then (not nearly as much as now) and because it was the tgab antibodies not tpo antibodies she said it was fine and didn't mean anything.

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QueenPaw · 03/06/2021 18:25

I feel for you. Eventually they put mine up to 50 when 25 did nothing, and then 75 (I'm 5ft 10) when haematology asked them how long they were keeping me on a homeopathic dose for Blush-- I love my consultant--
TSH is now about 1.3 on 75 so much better

Procrastatron · 03/06/2021 18:26

[quote Procrastatron]@Shezlon that is inconsistent with NICE guidance. You need a new GP. I was treated with much lower TSH and slightly higher T4.
What does your GP think will happen if they give you a bit of Levo? I’m so cross on your behalf.
You probably already know this but those numbers basically say that your pituitary gland is working extra hard to get your thyroid to produce not enough T4.
Gah![/quote]
Meant to tag @Smolgoose in this, but the point is still relevant to you
@Shezlon
.
@Shezlon Have they tested your T4 levels? TSH and T4 work in a feedback loop between the thyroid and pituitary. Your TSH goes up if there isn’t enough T4 detected.

Shezlon · 03/06/2021 22:03

I had it tested privately, my t4 (that's thyroxine right?) was 13.3 with a range of 12-22.
Free T3 was 4.7 with a range of 3.1 - 6.8

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Smolgoose · 03/06/2021 22:58

@procrastatron I am planning to move GPs, my current one gave me a lecture about how levothyroxine is dangerous and can cause heart arythmias

@shezlon I cried after my most recent GP appointment, I think mainly from frustration! When you feel awful the last thing you want is to be butting heads with a doctor.

I find it so hard to advocate for myself too, because part of me says they are the doctor so they know best, but then speaking to others on the same boat online makes me realise that there are some conditions that are very poorly understood by the majority of doctors

PrimeraVez · 05/06/2021 17:49

What I would say is even if you feel ‘well’, if you start treatment, then you might discover a whole new meaning to the word!

I first saw my GP when I felt awful and my TSH came back as 181. I was referred to an endocrinologist and since diagnosed with Hashimotos.

I’m pregnant at the moment, but when I’m not, I’m happiest and my best with my TSH around 2. Much higher than that, and small things start creeping in - constipation, dry skin, tiredness.

Things that only stick out now, now that I know I don’t always feel like that, if that makes sense?

Shezlon · 05/06/2021 20:17

It makes perfect sense, yes. I noticed that when I found out I had pernicious anaemia a so many little things that I'd just thought were the way things were, completely disappeared when I got treatment.
But a TSH of 181?! That's crazy!! No wonder you felt awful.
I just have to gear myself up to tackle it I think, I've tried so many times before and just been completely dismissed.

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