You learn something new every day

[debsw007]

Well, I thought by having regular blood tests for hypothyroid that I was being managed and medicated properly. I'm in the Ask Eve group and found this community while searching for information about complications with hrt and thyroid dysfunction.

WOW is all I can say, I never knew anything about T3 or T4 and many more terms which are used on here to describe the conditions. I was diagnosed hypothyroid about 15 years ago by a military doctor (my late husband was RAF) and was just told that I had an underactive thyroid and needed daily medication. I also have heterozygous Factor 5 Leiden, which was discovered at the same time. I do have regular blood tests to monitor my thyroid, but I have no idea what any of the TSH, FT3, T3 or T4 levels are. I'm currently on 125mcg Levothyroxine, but should I be asking what my levels are and whether i'm being tested properly?

I came to ask the question because I'm facing a possible hysterectomy (age 44, constant gynae issues since early twenties) and would probably go into menopause, so would like to know more about my options for HRT given my blood and thyroid complications.

Sorry for the long-winded post, all help and advice will be greatly appreciated.

[greygoose]

The first thing you should do is ask for a print-out of your results. If you live in the UK, it is your legal right to have copies of all your results. When you get them, post them on here, with the ranges, and people will be able to help you. You need to know exactly what was tested and exactly what the results were. I'm afraid you cannot just trust your doctor to know what he's doing when it comes to your thyroid, because most of them don't have the first idea!

[bluebug]

Before you have the hysterectomy I suggest you get all your thyroid test results with ranges - in fact I suggest you get to look at all your medical records and take copies of the tests with ranges.

You have to do a subject access request under the Data Protection Act 1998. More information can be found on the Information Commissioners website - ico.org.uk/for-the-public/p... - and country specific NHS site e.g. for NHS England - nhs.uk/chq/pages/1309.aspx?...

The reason to do this is period problems are frequently due to insufficient thyroid medication and you shouldn't have a major operation if just giving you more thyroxine and taking some vitamin/iron pills could help.

Once you get your latest results post a new thread with the results and ranges and posters will comment.

[debsw007]

Thanks to both of you for such quick replies. I will be contacting my doctor before I get my MRI results I think. I would rather go to see the specialist armed with the correct knowledge.

I don't know if it will change things for the need of an op, as I have severe cervical stenosis, irregular endometrial thickening and a pocket of fluid in my uterus. I am awaiting a consultation after a failed hysteroscopy (due to the stenosis) and then an MRI last week, to try and get a better diagnosis and treatment plan.

I'm so shocked that I have been kept in the dark about all of the extra things that may important about my hypothyroidism, but from reading many posts I suspect this is due to a lack of knowledge on my GPs part. My regular GP moved practices, so I have been passed from pillar to post over the last few years. I have been lucky that I have actually seen the same lady doctor the last two times i've been in, and she ordered the current round of tests that i'm having.

Fingers crossed that if I am more knowledgeable myself, I can ask for the test information and be better prepared for things to come. Thank you so much

[humanbean in reply to debsw007]

Very few doctors are knowledgeable about the thyroid, and I'm including endocrinologists in that statement - endos are mostly diabetes specialists. Most of them have been taught that hypothyroidism is easy to diagnose and easy to treat. And if the TSH is within the reference range (preferably the middle or upper half of the range according to many doctors) then any symptoms the patient continues to complain about are in the patient's head or are caused by "something else". It is almost unheard of for the "something else" to be investigated. The usual "treatment" for "something else" tends to be anti-depressants.

There is a belief in many thyroid patient groups that doctors only spend about an hour during their training on learning about all the problems which can afflict the thyroid. Some people suggest it is even less than that. Based on some of the things I've seen reported on this group I find this easy to believe.

[debsw007 in reply to humanbean]

Hmm, I am on Fluoxetine to help manage the symptoms of low mood and anxiety. I don't really think they make much difference to be honest. I'm definitely going to ask my GP for my records and maybe even ask for a haematology referral before I make any decisions about the hysterectomy. I can only worry that I might be setting myself up for even more trouble than I already have.

[humanbean in reply to debsw007]

I suffered from depression for many years. But optimising as many nutrients as I could, and improving my Free T3 reduced the problem a lot. Other things that have helped are lowering my high cortisol, and including more fat in my diet.

Another thing I take is 5-HTP - an over-the-counter anti-depressant which is easily obtainable online (on Amazon for example - read some reviews) or in H&B or other supplement shops. These days I only take 50mg about 3 or 4 times a week.

Sadly, like any anti-depressant (prescribed or otherwise) it can't be mixed with other anti-depressants.

I think you are right to be cautious about agreeing to a hysterectomy. I had a total hysterectomy in my 30s and was unable to tolerate HRT. (Nobody can tell in advance whether or not they will tolerate HRT, and many women on here don't like it anyway, they prefer to use bio-identical hormone creams or treatments.) As a result my bones, which were very healthy, are now galloping towards osteoporosis at a great rate of knots. Having learned about my thyroid and nutrients in the last few years I'm hoping I've managed to stop the rot, but I'm not very confident.

This is a website well worth reading :

hersfoundation.com/

If you are going to have surgery that will change your life you need to know what you are letting yourself in for.

[Angel_of_the_North in reply to debsw007]

Anything with fluor in the name will suppress thyroid function. Low mood is a symptom of thyroidism.