This morning after struggling out of bed at 10 a.m. (I've felt like this all week) thank heavens I'm now retired (but what a retirement!) and feel so miserable with this illness (hypo, diagnosed about 10 years ago but has got worse as I've got older and so havent been on levo all that time - but now on 25m a day). I live alone (apart from my little dog!) and write this with tears streaming because I havent even got the energy to go out and I am becoming a bit of a hermit although I do have many friends. I've just been wandering around the house in my dressing gown all week! I had a blood test on Friday at the hospital (one every 5 weeks or so) and was surprised to get an NHS text only a few hours later asking me to see my GP. I rang the surgery as it worried me but was told not to worry its just my thyroid was very low (didnt she mean very high?) and made an appointment for a weeks time (the first one they had!). I wasnt surprised as I have felt really bad. Now, already, I'm trying to work what to say to her as I'm easily intimated - from what I've read on here I would like to ask if my T3 has been tested (she only ever gives me one reading, the last one being over 14, would that be the TSH?) and I'm too intimated to ask for the whole readings. I also want to ask her about my lack of conversion. I find it very difficult to absorb information as my memory is so bad right now. My underlying fear is that she will decline to treat me - can GPs do that if a patient gets too demanding? Sorry to waffle on, its hard to put on paper succinctly what I feel in my head, due to it being so foggy in there! Sheila x (ps Sadly I cant afford to see a doctor privately)
Asking a GP for more help: This morning after... - Thyroid UK
Asking a GP for more help
Hello there, sorry to hear you are feeling so bad and hope your appointment brings you some help. Is it 25mcg you are taking,if so that is really a very tiny dose and unlikely to have done much.How long have you been taking it for? QPlease try to not be intimidated by the docs and find the will to say something like'i would like to increase my dose until it increases the free T4 to a high level in the range (and TSH much lower).I know it not easy if you have never been that way,but it honestly very often does have the right effect and they will increase. This may already be what they have in mind since they have requested to see you.
Sorry forgot, if you don't want to ask the gp for results printout,ask the reception for a copy of your blood test results,with reference ranges, they cannot refuse this since it is your right to have them.I have never had a problem with getting these,they are given with no problems.I hope you find the same, if not,insist on having them.good luck
Thanks for that, although I'm even more intimidated by the receptionists!! What does it mean by "free" T4? Its all so complicated isnt it? Or maybe its just me and my foggy brain!
Hi, free T4 is the measure of thyroxine in blood it is indicative of the amount you have circulating and from which T3 is converted.A full proper thyroid blood test at least should give TSH,Free T4 and ideally T3 but this unlikely to be done routinely.Anti bodies too is useful,but at least a good start would be the 3 main ones.Surely these will have been done for you if you are having blood tests every month or so? Please ensure you ask and get your blood results and if you post on here someone,more knowledgable than me,will comment.Free T4 is usually better to have it in the mid to high range of lab values,TSH is better low in range.T3 test will show if you are converting T4 to T3 so is really the very useful one to know where you are.Be strong and get the answers you need from GP.I know it's hard but may make a huge difference to you. Take care
Just to say that I really relate to how you feel. My worst symptoms were when I diagnosed borderline 20 years ago. Since then anti-ds and sleeping pills. I've been on 25mcg Levothyroxine for for nearly two weeks, after a routine blood test. I've felt worse since taking the Levo but have good days and bad days. Today was pretty good. I also live alone and my home is such a state I'd be embarrassed to invite anyone round.Since taking the Levo I've had to cancel social occassions. I saw ex colleagues at a quiz on Monday, and saw friends today plus rehearsed (amateur orchestra) I've talked on the phone, but didn't see anyone I knew for 5 days.
I left my full time job in September, a big hole in my life as I lived it. There is no way that I would be able to cope with the hours now.,left at the right time, I was struggling. My hours would have increased if I had stayed. Plus I didn't believe in the changes to my role. Over half the staff left at the same time.
I've always been very independent. The first whammy for me this year has been developing a cataract in one eye. When I was ill 20 years ago I didn't look it, I was hauled over the coals re being off sick, no sympathy generally, I worked and flopped. Couldn't sleep.Things seemed toi improve a bit after that.
It i wrong that I now have a TSH above range, but less symptoms. Something should have been done earlier. I cannot be branded lazy or a skiver now as I do not work or claim benefits. But I felt it at the time.
Sidney your 25mcg is so low it cannot be doing you much good. This is a quote re someone being prescribed 50mcg.
April 22, 2007
Question: My doctor recently diagnosed me as having hypothyroidism. She prescribed Synthroid. She started me on 50 mcg and then increased it to 75 mcg. Before starting the drug, I’d become a little foggy headed and was tired, which was unusual for me. But after starting it, I became outright miserable. I was depressed for the first time in my life, and I was so tired that I could hardly get out bed. I became constipated, and I could hardly think at all. My thinking was so bad that I was afraid I was going to lose my job. Because the drug made me so miserable and dysfunctional, I stopped it. That was three weeks ago, and I’m starting to feel better now. My doctor is convinced that I had some coincidental illness, and she wants me to start taking Synthroid again. I disagree with her. The relation is just too clear cut. I felt like crap after starting the drug, and after stopping it, I’m feeling better. Do you have any idea why I would react to the drug this way?
Dr. Lowe: First let me say that what you experienced is fairly common. Many patients react to low-dose T4-replacement as you did—badly—regardless of the brand of T4.
There are two potential sources I know of for people feeling awful when they are on T4-replacement. One source is the extremely low dosage that doctors typically prescribe nowadays. A low dose of T4 can effectively reduce TSH secretion. The lower TSH can in turn lower the thyroid gland’s output of thyroid hormone. At the same time, low-dose T4 may not compensate for the thyroid gland’s reduced output of thyroid hormone. The patient then has too little thyroid hormone to properly regulate the metabolism of most of her body’s tissues. She then ends up with abnormally low metabolism and troubling hypothyroid symptoms. I’ve written about this before on drlowe.com.
web.archive.org/web/2010103...
Email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's article in Pulse online. Part says. Highlight this part and show to your GP as many do not know how to treat us:-
6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?
The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
Sheila, I am so sorry about the state you are in. Very sad to read, indeed, and so unnecessary when the difference between you and good health is a few milligrams of thyroid. I guess you feel undeserving but I assure you, you are as deserving as anyone else and you have got to display yourself as such because others will only see you as you see yourself. You have every right to these few milligrams of thyroid extract.
If the office called you because of low thyroid...because your TSH is HIGH....that means your thyroid output is LOW, at least they see you are in need of more medication. Please get yourself in there and don't leave until they understand how unwell you are.
I know the NHS doesn't seem to want to check your FT3 level which is the third leg and really necessary. Your TSH will cause them to respond if it's over 4 but that is still too high. Even 2 is too high for many people. Your FT4 should also be high but need to find out what range your lab uses. If it's 12 to 24, 20 might be okay. If it's 6 to 18, 14 might be okay, if you also feel okay. This supplies the storage of T4 to be drawn from for your metabolism to work. The FT3 is actually what is available for immediate use and this is important in revealing your conversion. They seem to deny people this test so some have it done privately through Blue Horizon or Genova Europe. I think there is a list of prices on this site. But if your TSH is high and your FT4 is low, they might decide to raise your thyroxine on that basis. I don't know how much thyroxine you have in hand but since they are probably going to raise your dose next week anyway..........hmmm.
Thank you Heloise, Hmmm indeed. I do wish I could absorb all this information on thyroid illness. Because of my foggy brain and poor memory (and old age!) I find it very hard. So when I get in the GP's room, anything I do know goes out the window and I just end up letting her just give me the TSH level and actually if I ever do question anything, she obviously thinks that's enough - just go away and take the thyroxine! I think I will write it down and take it in with me, although when I did that before, when I took the piece of paper I could almost see her groaning inside and put it back again - I know, pathetic eh? I just dont know how to ask for my FT3 to be tested and could it possibly be tested and I dont know about it? Anyway seeing her next Monday, so will compose a plea!
Sorry for the heresy but I would increase on my own right now in hopes she will do that in a few days but I know it would be quite impulsive for you. Would you run out of your tablets too soon if you did that? I don't know how your system works with prescriptions. Do you get just enough for one month? If she changes your dose, do you get a new prescription?
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No, will wait until Monday, want to see what she suggests. And yes would run out of tablets.
So what have I been doing when replying? Havent been on here long so need to know please - what happens if I dont do what you suggest? Thanks.
The person to whom you reply will NOT get the message just like the one you got from my reply to you. Otherwise, unless I reviewed the whole page myself, I wouldn't have seen it. And I normally don't go back to check but I just happened to do it this time.
I
oh ok thank you
We know exactly what you mean, believe me many of us have gone through the wringer (so to speak). 25mcg is such a miserable dose, I don't know why your doctor hasn't increased it every six weeks until you are symptom free and that your have sufficient Free T4 and Free T3 circulating throughout your body.
Many of us have seen a Private doctor/endo and come away very disappointed and such a waste of money.
All of your blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. This helps keep the TSH at its highest and may prevent an unnecessary adjustment. They should only take notice of the TSH if we're undiagnosed, thereafter they should take more notice of clinical symptoms instead except they know none at all.
If it is your TSH which is over 14, you need an immediate increase. The aim is a TSH of 1 or lower. We also need a Free T4 and Free T3 to be in the upper part of the ranges but these are rarely tested. I don't know if you can afford these but we have two private labs who do home pin-prick tests and if you decide to get these (I do know money is short) make sure you are well hydrated a couple of days before so that blood draw is easy and hands/arms are warm. Medichecks do a special offer of some sort every Thursday and Blue Horizon is another good lab. You can tick off your symptoms and show to GP (she/he will know none).
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Most of us Do It Ourselves with the help/advice of those who've recovered despite the guidelines and with the help of members.
Always get a print-out of your results with the ranges (ranges are important as labs differ).
Always take levo first thing on an empty stomach with one full glass of water and wait an hour before eating. Food interferes with the uptake although your dose is so low in the first place.
Ask GP to also test B12, Vit D, iron, ferritin and folate as everything has to be optimum. Always quote ranges of the results so that members can comments.
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