Newbie here, hope you're all sitting comfortably!

[Grannypants]

Hi, I signed up a few weeks ago but haven't posted until now as I was waiting for the results of my blood test..which I'll post. A bit of background first though.

I've just turned 59 and my problems started 14 years ago. After a stressful 4 and a half years of living apart under the same roof as my then husband, he finally moved out in March 2003. By October of the same year I was in a state of bliss and gave up smoking. I was a heavy smoker, (30-40 a day) and insomniac (averaged 5 hours sleep a night). After the initial struggle with nicotine withdrawal I assumed I would start to see the benefits. Never happened...by February 2004 I had all the symptoms of an underactive thyroid, bar one...I don't feel the cold. I gained two stones, had a hoarse voice, slept for 16 hours a day, slurred speech, mental fugue, depression. One of my daughters commented that if she didn't know me better she would've thought I was drunk!

I knew immediately what the problem was as my mother had hypothyroidism that had gone untreated for nearly 20 years, all because her old school doctor would ask "do you feel the cold?" "no, but I have all the other symptoms" replies my mother. "Then you haven't got an underactive thyroid!" Never did a blood test. Scroll forward to meeting with Cardiology consultant for results of various tests after several mini strokes and heart problems. He went through the various test results with my Mum and casually mentioned at the end "Oh and do you know you have an underactive thyroid?" Think had she been physically able to, my Mum would have done a lap of the hospital with her jersey over her head! Finally...vindication!

I then had 3 frustrating years of GP appointments to be told my tests were borderline and it would be harmful to prescribe Levo if I didn't need it as it could cause heart problems. By the end of year 3, I'd had enough and started self medicating with Levo from my Mum (they were always over prescribing and changing her dosage). Started off small but it didn't take long before I began to feel the benefits. I self medicated for a year then confessed to my doctor, just in case I was ever admitted to hospital for any reason as I felt they'd need to know about the Levo. Doctor was extremely apologetic and I've been on Levo in varying doses ever since. Can't say I've ever felt well in the last 14 years though. I would point out that previous to the onset of this my cholesterol came in at 5.something. It jumped to 8.2 during my unmedicated phase and only dropped again once I started on Levo. I started going through the menopause at 37 but my (male) doctor didn't accept that and put me on anti-depressants. Two years later and with more menopausal symptoms a female doctor put me straight on HRT and commented that my tests results two years prior showed raised FSH. My mother had an early menopause too.

There is a pattern emerging of doctors ignoring me and my family history and it's as frustrating as all get out. Especially when I learn that most of the medication I take now could have been avoided if GPs had just listened to me in the first place. I feel angry and badly let down as all of this has had a negative effect on me and my family. Rant over (for now).

Test results. (I've copied them exactly as printed as I don't even begin to understand them.) I was on 150mg Levo and I stopped them for 48 hours prior to having bloods done. Dose reduced to 125mg as of yesterday with retest in 8 weeks.

Serum TSH 0.09 mu/l 0.34 - 5.60mu/l

Free T4 12.1 pmol/L 7.9 -20.0 pmol/L

Free T3 5.6 pmol/L 4.00 - 6.60 pmol/L

I eagerly await your feedback, and once again, sorry for the longwinded rant!

[greygoose]

Oh dear. Stupid doctor - another one! Dosing by the TSH. Will they ever learn?!? Probably not.

OK, so your TSH is suppressed, and that is all these ignorant doctors look at, because they don't understand the other two (believe it or not!). TSH isn't even a thyroid hormone, it is a pituitary hormone, that is intended to stimulate the thyroid to make more thyroid hormone. Of course, when you are hypo, your thyroid cannot respond, so the TSH gets higher and higher, and that's how they diagnose hypothyroidism (totally wrong way to do it of course, but we won't go into that here).

So, they believe that if a high TSH means hypothyroidism, a low TSH must mean the opposite! Hyperthyroidism. But, it doesn't always. That is why you have to test the actual thyroid hormones, T4 and T3. T4 is the storage hormone - and that's what you're taking when you take levo - which has to be converted into T3, the active hormone. And, as long as the active hormone is within its range, you are ok, not hyper, and not over-medicated.

In that test there, your FT3 looks quite good. Some people would feel good on it at that level. But, there is room for improvement if you don't feel good. But, try and tell that to a doctor! All they see is the low TSH, and don't have an inkling - not even the beginning of an inkling - about what the FT3 even means! So, he reduced your dose, which will mean that your T4 will reduce, which will mean that your T3 will go down, which will more than likely mean that you will start to feel hypo again! So stupid!

Just one point, here. You said you stopped taking it about 48 hours before the blood draw. Normally, we tell people to leave 24 hours. Leaving 48 hours will mean that that FT4 result you have there, is a false low, which is a shame, because now, we can't see how well you are converting. Leaving off the levo for too long, like that, will affect the FT4, but have little effect on the FT3 or the TSH, so that gives you an unbalanced result. Looking there, one is tempted to think that you convert very well. But, that may not be the case, in actual fact, because you have a false low for the FT4. So, in future, just leave 24 hours.

Oh! Forgot to ask, what time of day did you have this test? TSH is highest early in the morning, and drops throughout the day, so we always advise having the blood draw as early as possible - before 9 am - and fasting over-night. Because TSH also drops after eating.

[Grannypants in reply to greygoose]

Will do. This is where I need tips and pointers regarding testing etc. This doctor is one I've just changed to as the arrogant a**hole who ordered the tests also stated he wasn't happy about prescribing HRT to over 55's. I'm just doing what I can to remain functioning for my work shifts and if I feel well on HRT I'm in no hurry to stop it.

New female doctor is lovely and open to suggestions but as it was only my first meeting with her yesterday, it's baby steps til I can produce evidence in a way that isn't going to alienate her. Her suggestion to reduce my dosage is to control my high resting pulse as I've now got high blood pressure but she did say that if I really start to feel rubbish, to go straight back to her.

[Grannypants in reply to greygoose]

Sorry, just saw your question at the end. I had the blood test at 9.40am and hadn't fasted but I don't eat breakfast. I do, however, drink strong coffee with milk as I'd never wake up enough to drive.

[greygoose in reply to Grannypants]

OK, well, that is probably going to lower your TSH.

Not eating breakfast is bad for your adrenals. They need protein first thing in the morning, so that they can get you up out of bed and off to start your day. Starve your adrenals, and you will live to regret it! Especially if you're hypo.

High blood pressure is also a symptom of low thyroid. So, as you weren't over-medicated, lowering your dose will probably make that worse.

I don't know a whole lot about HRT, but if I were you, I would do some research on it myself, just to make sure there are no drawbacks to continuing taking it.

Do you take your levo on an empty stomach and wait at least an hour before drinking your strong black coffee with milk? Because, if not, you will be affecting the absorption of your levo.

[Grannypants in reply to greygoose]

I've haven't eaten breakfast since I was about 14, I can't face food first thing in the morning. I take my Levo before bed, with water. I didn't know about not taking it with caffeinated drinks until a year ago when I was working in a pharmacy department and saw it on patient labels. Naturally I asked the pharmacist as no doctor has ever told me about that to this day.

[greygoose in reply to Grannypants]

I very much doubt any doctors know about it! That's why we need forums, like this!

[Grannypants in reply to greygoose]

Well with just that one simple change I've lost just over stone...Just another two to go 😁😄

[greygoose in reply to Grannypants]

Well done for that!

[ljk1]

I took HRT, if it suits you stay on it as long as possible, I felt dreadful when I came off it!

[Grannypants in reply to ljk1]

I'm trying to and my new GP is quite happy for me to stay on it as long as my BP is stable and breast exams are ok. The crunch will come next year when I turn 60 and I have to have my Mirena coil replaced. My HRT is a combo of 1mg Eleste Solo and the Mirena coil as I don't respond well to progestogen in tablet form, it makes me very depressed. I did come off HRT many years ago for about nine months because of my reaction to the progestogen-only phase of the HRT I was on at the time (Tridestra I believe?) made me suicidal. Without HRT I suffered from a terribly irritable bladder (not very convenient when at work) and joint pain. I'm going to hang on as long as I possibly can!