under active thyroid diagnosis : back in October... - Thyroid UK

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under active thyroid diagnosis

Katieolivia profile image
16 Replies

back in October 2023 I went to the doctors due to noticing my hair was snapping and falling out they suggested I have my bloods checked

Bloods came back and confirmed I had an underactive thyroid low folic acid and low vitamin d

I was started on 50mg levothyroxine for 7 weeks

Fast forward the 7 weeks o had a follow up telephone appointment with my GP, he asked a few questions had I noticed an improvement with my hair - yes it had started to improve

Had I lost any weight - No

Had my tiredness improved - No

He made the decision to take me off all medication without re testing my bloods and said we will recheck bloods in January

January came round and I had my bloods checked again - doctor explained my levels had dramatically changed and I needed to go back on medication (50mg) and he would check my bloods again

I had a telephone appointment yesterday and he said some numbers had improved and some hadn’t - reluctant to give me details

He then said he wanted to stop all medication again and re check me again in 2 months to which I said No - we have already tried this

So he has increased my medication to 75mg

Has anyone else gone through this whilst trying to be diagnosed

I genuinely can’t believe how difficult it is to get a straight answer

Any help would be appreciated

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Katieolivia profile image
Katieolivia
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16 Replies
greygoose profile image
greygoose

He can't give you a straight answer because he doesn't know enough about it. He has no idea what he's doing! If he knew anything about thyroid, he would have double checked your bloods before starting you on levo. Once on levo, he should know you need it for life because you're not going to become non-hypo! That just doesn't happen. He should have retested at the 7 weeks and would more than likely have found you needed an increase in dose then, not stopping altogether!

So, at least you're back on track, now, and taking levo again at an increased dose. The next thing you have to do is contact reception and ask for a print-out of your blood test results - it is your legal right to have one. You need to know exactly what has been tested and exactly what the results were, and keep your own records.

When you get those results, post them on here, with the ranges, and let's have a look. :)

Katieolivia profile image
Katieolivia in reply to greygoose

Thanks for your advice! This is the 2nd doctor I have seen! I have request my blood results to be sent to me this morning

greygoose profile image
greygoose in reply to Katieolivia

Sent how? What you need is a print-out. Less room for errors!

Katieolivia profile image
Katieolivia in reply to greygoose

these are the results of the blood tests I had done in January after 7 weeks off medication

Black and white
Katieolivia profile image
Katieolivia in reply to Katieolivia

these are my most recent results where the dr wanted me to come back off meds and be re tested again in 7 weeks - I said no and I’m now on 75mg a day to be retested again in 2 months

Black and white
greygoose profile image
greygoose in reply to Katieolivia

Well, your TSH is still much too high, and your FT4 too low.

Your B12 is so low you should be tested for Pernicious Anemia. And your folate and vit D are rock bottom, too. What are your doctors doing about that? Seems like they don't know anything!

Katieolivia profile image
Katieolivia in reply to greygoose

He gave me 2 options

1. Stop all treatment and have bloods re checked in 8 weeks

2.increase dose by 25mg and to buy vitamin d supplements and folic acid over the counter and re test bloods in 8 weeks

I went for option 2 as we already tried option 1

greygoose profile image
greygoose in reply to Katieolivia

He's an idiot.

But I think you're going to have to buy vit D supplements OTC because he'd only give you the wrong one, and not enough of it! And you need to take it's co-factors with it: vit K2-MK7 and magnesium. Otherwise, it won't do anything for you.

As for folic acid, don't buy that! Folic acid is the synthetic version of folate, and not as well absorbed. And all the B vits work together and need to be kept balanced. But doctors know nothing about that. So I would advise you to buy a B complex containing methylcobalamin (B12) and methylfolate. Thorne Basic B is a good one, or Igennus. BUT you should be tested for PA before you start taking it. As a general rule, never ever take nutritional advice from a doctor. They know less about it than they do about thyroid - and that's saying something!

Katieolivia profile image
Katieolivia in reply to greygoose

Thank you so much for your reply

I think a trip back to the doctors is needed and to ask for a different doctor

tattybogle profile image
tattybogle in reply to Katieolivia

Seems pretty clear .. can't see what GP problem is .

7 wks off levo ~ shows clear overt hypothyroidism ... TSH way over range (32) / fT4 under range (9)

(re!) start 50mcg levo .

8week retest on 50mcg shows ~ TSH now lower(9) but still over range / fT4 in range (14) , showing dose has has some effect but is not high enough ... so increase dose to 75mcg ... simples .

I can see absolutely no logical reason for GP to suggest stopping (again !).

The lab comment clearly tells him what it means .... "suggests ... inadequate.... replacement" ie. 'increased dose needed'

it's a good job you 've got a brain katie, cos this GP doesn't seem to have one.

I think this GP needs to explain their actions ...... ( perhaps there is something else that we are not aware ? ie. i'm not sure why your results say 'Specialised Chem Review ' all over them (if that is what it says , i can't quite read it clearly) ... not a comment i've noticed before on blood results ... maybe ask your GP what it means).

.... but trying to take a patient who has clearly documented evidence of overt hypothyroidism off Levo for another 7 weeks is not going to do them any good at all and is likely to make them very unwell.

maybe the still high TSH is confusing the GP , but GP should realise TSH can take a while to come down when it's been so high.

Katieolivia profile image
Katieolivia in reply to tattybogle

Thank you so much for your reply I think a trip back to the doctors is in order and ask for a different doctor

Obsdian profile image
Obsdian

That would make me another doctor

Katieolivia profile image
Katieolivia in reply to Obsdian

this is the 2nd doctor I have seen

Honestly I think you should avoid this doctor, if your levels were bad enough to warrant starting you on Levo, no mean feat on the NHS, which is notoriously reluctant to start thyroid treatment, then why does he think that 7 weeks of meds were going to result in a miraculous cure?

Thyroid meds once started are normally lifelong. And then he compounded his error by threatening to take away your meds again. I dont know what he's trying to achieve but you aren't his personal lab rat and he has no right to be messing you about and making you ill. He doesn't sound like he has the first idea of what he is doing.

Katieolivia profile image
Katieolivia

this is the 2nd doctor I have seen both seem to be saying the same thing

Sparklingsunshine profile image
Sparklingsunshine in reply to Katieolivia

There are a lot of stupid doctors around, they hunt in packs.

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