Hello, I wanted to update about my situation as... - Thyroid UK

Thyroid UK

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Hello, I wanted to update about my situation as I had this strangling inside my throat a week ago.

sasana profile image
8 Replies

I was diagnosed with hypothyroidism in 2010 (in Germany) and got L-Thyroxin 75mg and something was visible in my thyroid. My weight is much much higher now and when I had a blood test in March my GP here in England told me I wouldn't have any problems with my thyroid! So I stopped taking my pills and in October I started to get choking feelings in my throat and had since months all symptoms of hypothyroidism (always freezing, dry skin, extreme weight gain, acne, brittle nails etc.). I went back to the GP (a different one in the same surgery) and requested another blood test for my thyroid. When she got the results she told me too everything would be fine! Choking and other symptoms were extreme though.

I requested a copy of my results now and am so angry! For a start, she didn't test my T3 and T4 at all.

She tested my TSH and my FSH/LH and oestradiol.

My TSH is 2.86 ! I know after the old reference it was supposed to be ok, but now it isn't!

I feel awful!

And I found worldwide loads of threads in google of people who had exactly my result and who were told that they should be treated urgently!

The joke is, in March when I had the first blood test my TSH was already then 2.41 (although I took my thyroid pills in this time!) so it was already then on the border of too high and had probably been necessary to raise the dosage,

and then she told me it's fine and I stopped taking my pills and now it's even higher!

That what makes me so angry is, that I have terrible symptoms on my skin etc. the weight gain.. that all could have been avoided if I hadn't got the wrong information TWICE of a doctor I trusted!

(I suppose there is nothing I can do against them for giving me the wrong information what caused me bad health

issues?)

I really wonder now if I have to diagnose myself from now on, or if I really have to go private forever because the GPs have no knowledge at all?

Imagine they are like that with all their patients.. if they would tell someone not to take his heart medication anymore for example, that might be fatal!

I'm so angry right now.. I'm sorry for the ranting.

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sasana
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8 Replies
shaws profile image
shawsAdministrator

That's what this forum is for, to let off steam when you do not get the treatment we deserve. Due to the guidelines set by the RCoP and BTA, many GP's are under the misapprehension that as long as your TSH is 'within range' that you have no thyroid gland problems at all. Those of us who have had a struggle, know that we do need a dose of meds which relieves all clinical symptoms, regardless of the TSH.

Labs appear only to doT3 if your TSH is very high or very low The assumption, again, is a TSH within range means normal thyroid gland function.

We have more or less to read enough about our conditions in order to get ourselves well, regardless of the limitations on the medication we get prescribed.

Members, realistically, should not buy their own medication, but what else can they do when driven to desperation to try to get well.

It is a fact that hypothyroid patients are prescribed additional medications for clinical symptoms which are diagnosed as 'not connected'. In fact we may be open to more serious consequencies such as heart, diabetes, etc.

Clutter profile image
Clutter in reply toshaws

My TSH came back 107.5 (0.35-5.5) & FT4 4.2 (10.0-22.7). Not abnormal enough for the lab to bother with FT3 tho'.

sasana profile image
sasana

Thank u for your answer shaws.

I still can't get it into my head that these people are paid for wrong diagnoses.

My health became worse over the last 6 months and I find nearly all of my problems as side effects of hypo!

I could have spared a lot of pain and other troubles if I just had taken my medication!

I am also worried because how do I get my supply of necessary thyroid pills if for any reason I can't get them off

my german doc anymore? If the gp here is sure "I have no problem"!

This is the second time that I had to diagnose myself, in 2003 when I gained weight and got other bad symptoms I went to the doc and he refused to make any tests and just told me to eat less! After I put all my symptoms into the google search it came up with pcos and then I went to a pcos specialist, he made tests and told me I've got it!

How can that be that docs simply don't help, not even if the possible reason for the health issues is put in front of their nose?? I don't understand it. I also wonder how I can ever trust these docs again, I tried it with two of them now and both didn't know anything!

silverfox7 profile image
silverfox7

I've read somewhere a suggestion that pcos could be because thyroid function not right. I should pay, if you can, for a private test that includes FT3 and FT4 and post your results and ranges on here. Don't go to a private hospital but look on the Thyroid UK site for details. There are plenty of people on here who will be able to offer advice as to what to do next.

shaws profile image
shawsAdministrator

silverfox has made a good suggestion about getting a private blood test and this is the link. Most people, I think use Blue Horizon and by quoting TUK10 you get a discount.

This is an extract about PCOS but don't have a link:-

Multiple Ovarian Cysts as

a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If they have evidence, such as a high TSH, that conventional clinicians accept as evidence

of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's tissue thyroid status. Because of this, she may fair best by adopting self-directed care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the gynecology department because she had abdominal pain and her abdomen was distended

up to the level of her navel.

At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.Blood testing also showed that the woman had primary hypothyroidism from autoimmune

thyroiditis.

It is noteworthy that the young woman's ovarian cysts completely disappeared soon after she began thyroid hormone therapy. Other researchers have reported girls with primary hypothyroidism whose main health problems were ovarian cysts or precocious

puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an

ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]

Reference:

1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

24(10):586-589, 2008.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Redditch profile image
Redditch

Take your temperature and forget the doctors I don't even engage with my GP Now.. waste of time.

If your temperature is less than that of a human 37 degrees. Then you are Hypo... If it's normal you are not.

If you did have antibodies and they have now gone, then your auto immune issue is over, but you may need a maintenance dose of something to keep your temperature and everything else OK.

helvella profile image
helvellaAdministrator in reply toRedditch

Failing to engage with GP is often a poor strategy - though I do understand why people end up there, I cannot accept it is good advice.

There are many reasons to keep a reasonable relationship with a GP even if failing to do so in the specific area of thyroid treatment. After all, there are many other diseases (some of which might even not be caused by thyroid issues!) and their help can be critical.

Rod

sasana profile image
sasana

Oh thank u so much for all the information!!

My "normal" body temp is about 35.8 since at least 15 years!! OMG I didn't know that would be a sign!

Thank u also for the advice about PCOS and hypothyroidism!

I will check out the possibilities of a T3 and T4 test over here and how much it would cost.

I start to think all my problems within the last 10 years could have been avoided if I'd known earlier!

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