Thought I was OK and then ....

[Mionaonthehill]

I had a partial thyroidectomy in June for a suspicious nodule. After two months wait I got the all clear. After the operation though I started to feel unwell. Insomnia, lack of appetite, cold extremities, hair falling out in clumps and feeling dizzy. Started to do medichecks Thyroid test and my TSH had increased from 1.27 in January to 5.04. Autoantibodies also very high abnormal. GP not very concerned so went to private Endo in London who diagnosed Hashimoto’s due to other Co existing autoimmune problems and put me on thyroxine 50mcg. Started feeling bit better. Go to GP today to get further medication. Letter from Endo had not arrived so I explain and show her my medicheck results. Now GP saying I don’t need thyroxine but they might let me have it for another month to wean me off it. They wouldn’t give me HRT anymore either on previous visit but Endo had recommended it as well. Not sure what to do now. Very frustrated and angry. I finally felt I was getting back on track this last month on the thyroxine. I feel I might be forced to self medicate or change GPs. But so difficult to get sympathetic GP it could all be for nothing. Any advice?

[pennyannie]

Hello Mioaonthehill

Just for reference, a fully functioning working thyroid would be supporting you daily with approximately 100 T4 - Levothyroxine and 10 T3 - Liothyronine.

Having had a partial thyroidectomy, I think it would automatically mean that you have lost some of your own thyroid production and think thyroid hormone replacement necessary.

Your rising TSH is an indication that you need some thyroid hormone replacement, and would suggest that you post back on here the full results from the Medichecks report with the ranges, hopefully to include T3 and T4 along with the vitamins and minerals if tested.

Is there a different doctor you can see in this surgery ?

And it's not all for nothing - your health and well being are imperative to you,

and you are just as important as the next person.

[Mionaonthehill]

Hi Pennyannie thanks for your quick reply. Below are my numbers.

In January this year when GP did a health check my TSH was 1.27 (0.3 to 4.2)

My medicheck results in June just after my operation were:

TSH 4.29 (0.27 to 4.2)

Free T3 4.21 (3.1 to 6.8)

Free thyroxine 12.7000 (12 to 22)

Thyroglobulin antibodies. 523.00 (< 115)

Thyroid peroxidase antibodies 12.8 (<34)

Ferritin 122 ( 13 to 150)

Folate serum 1.74 ( >3.89)

Vitamin B12 69.9 (37.5 to 188)

Medichecks in September (reference ranges same as above):

TSH 5.04

Free T3 4.43

Free thyroxine 12.5

Thyroglobulin antibodies 482

Thyroid peroxide antibodies <9

Ferritin 128

Folate serum 4.28

Vitamin B12 73.9

Currently taking thyroxine 25mcg daily for two weeks now 50mcg daily for last two weeks

no blood test so far since starting meds as directed by Endo but now disputed by GP.

[Mionaonthehill]

Hi Janey Janey

Well mine is a long story. A lump in my throat was noticed by the dentist and they sent some referral to consultant. From that I had scan, sent to endo surgery, biopsy then operation. Then waited 8 weeks for results bc endo surgery “forgot” me. Anyway I didn’t actually see GP with thyroid problems myself until after it had all started. To compound I am new to UK so was also new to GP at that time. So after operation when I was feeling very bad and GP and endo surgery didn’t seem concerned I went private to see endo because no one was taking me seriously. Endo was good and I believe her diagnosis is right but GP now opposing. I suppose where I come from we have a different system and you see a consultant quite easily and GP just gives meds if your consultant says you need them. It is unbelievable how the GPs fight you all the time. Whilst I can afford initial consult with specialist and medications I can’t afford to do it ongoing so need GP to prescribe the thyroxine.

[Hidden]

A TSH above 2 is a sign the thyroid is beginning to struggle.

As you have Hashimoto's you'll need to be on thyroid hormone replacement for the rest of your life as that causes gradual destruction of your thyroid gland.

Your FT4 was bottom of range. When on T4 only drugs, it should be close to the upper normal limit to ensure enough T4 is converted to T3.

As others have pointed out, if you've had a partial thyroidectomty, your remaining gland may not be able to produce enough hormones on its own even if you don't have Hashimoto's. If you've have had a partial thyroidectomy plus have Hashimoto's, I cannot understand how your GP can state that you don't need thyroxine...!

As far as I know, very few people take thyroxine temporarily. It's usually needed for life in people with hypothyroidism. The only thyroid drugs taken temporarily are, as far as I know, drugs used to treat Grave's disease (overactive thyroid), whereas thyroxine is usually prescribed for life. So weaning you off it would be crazy, especially given your elevated TSH, low FT4, and hypo symptoms!!!

IMO, you need another doctor if your GP won't listen to reason.

[Mionaonthehill]

Thank you Asanders69. I am on exactlybthe same page as you. With Hashimoto’s and an obviously declining TSH from

January, I have no idea why they are being so draconian with the prescription. I don’t mind changing my GP and if anyone has the name of someone in the Oxford area please send me a PM!

[Mionaonthehill]

Hi Janey Janey. The GP promised to talk to other GP and call me back today which they didn’t. Feel quite let down by this whole process. I don’t know why I have to fight for some tablets when I clearly need them. As you said cost is minimal. It’s as if they think you want to take medication for the fun of it.

[Mionaonthehill]

I don’t mind paying JaneyJaney it’s just the attitude of we don’t care about your symptoms or if it is affecting your life WE don’t think you need it so you can’t have it. In Australia where I come from I have always had a collaborative relationship with my GP. We could discuss things and she never dismissed my symptoms or treatment options and drugs.

[Mionaonthehill]

JaneyJaney got a call from the surgery saying they are giving me medication (must have found the consultant letter) then blood test in six weeks time. Don’t think it will be regular meds and they will try to stop it I believe. What happened to your appointment that they only took 5 minutes?

[Mionaonthehill]

That doesn’t sound good that your specialist made you pay money for nothing! You don’t want the cancer back but I know they sort of drop you once they think treatment is over even when the patient doesn’t agree which is very frustrating.

[MMaud]

Mionaonthehill - Has the letter from the Endo you say turned up now? If not, it sounds to me like you need to track down that letter, which you suggests instructs your GP?

I know when I have seen the Endo, the letters coming from his private practise come out a lot faster then when he is in his NHS consulting room. Of course, the fact the bill arrives with the former explains why that might happen!

However, more to the point, whether privately or NHS, I receive a copy of the letters. If you have a copy of the letter could you get that to your GP, if you haven't already?

Good luck with it all.

[Mionaonthehill]

Hi MMaud thanks for your advice. I took a copy to the surgery and handed it to the receptionist. They did call up and have given me 50mcg of thyroxine and told me to get a blood test and come back in 6 weeks. I am hopeful after this we can find the right dose (still have many hypothyroid symptoms so believe I need higher dose). I don’t think GPs like it when you try to get help privately even though they should be happy because it makes their life easier with diagnosis and treatment.