Please if someone could help me out I would be extremely grateful as I'm getting so frustrated and just feel like giving up.
My background;
I'm a 24 year old male, around 6 months ago I started feeling very drained of energy and very mentally exhausted and just have zero motivation to do anything, didn't think much of it at the time but a few months went by and it got worse and worse, also at this time my sex drive absolutely plummeted and had trouble performing.
Around 3 months ago I made a doctors appointment and explained my lack of energy and extreme tiredness, the doctor ordered a blood test, which tested various things.
My TSH level came back as being 5.7 which she said was slightly high but too bad (also my vitamin d was very low and cholesterol was raised) so she told me to wait 6 weeks and come back to be retested (something about antibodies?)
now at this point I felt very disheartened as I felt I had another 6 weeks of feeling like this. But I waited and got retested, it came back and the antibodies were normal but my TSH was 6.5, my doctor ummm'd and ahhh'd over the results and said she really didn't think the thyroid was an issue, but after begging with her she agreed to put me on 25mcg of levoyhyroxine which I've been taking for the last 4 weeks and I feel 10x worse after being on these tablets.
2 weeks ago I had another blood test to check my hormones as my sexual problems have gotton much worse, I've got a doctors appointment tomorrow to find out the results but the receptionist on the phone indicated that they came back normal. (It seems only my FSH and LH was tested, no testosterone?)
I'm sorry for the very long post, I'm just getting so fed up and I'm hoping someone can just give me some advice to tell/ask the doctor to get me on track of fixing this problem.
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John6113
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You are hypothyroid. Your GP appears to be working to some ancient guidelines whereby treatment for hypothyroidism doesn't commence until TSH is >10. The upper reference in my area is TSH 5.5 which is still too high for many people who are only comfortable when TSH is just above or just below 1. Nevertheless, clinical symptoms are supposed to be taken into account whatever the TSH level. Lack of antibodies simply rules out autoimmune thyroiditis (Hashimoto's). Elevated cholesterol is a symptom of hypothyroidism and usually drops when optimally medicated with thyroxine.
The normal starter dose of Levothyroxine is 75mcg in patients under 60 with no heart disease. 25mcg is so insufficient it can actually make you feel worse and is evidenced by your TSH continuing to rise. Ask your GP to increase your medication and you should feel improvement in some symptoms in a couple of weeks. If your GP won't agree I strongly advise you to see another GP at your practice for a 2nd opinion or change GP.
Ferritin, vitamin D, B12 and folate need to be high in range to aid absorption of thyroxine and help eliminate some hypoT symptoms which may actually be due to low vitamin levels. Ask for a test and make sure to get a printout with the lab ref range. Never accept a GP telling you your results are normal this is GP speak for dragging along the bottom in most instances.
Levothyroxine should be taken with plenty of water one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from calcium and iron.
You've had good advice so far. Armour is thyroid from porcine which is fairly close to human gland and used for decades but synthetic T4(Levo) is cheaper (not much really). Some of us are getting our own natural hormone but the UK doesn't approve.
Here is some information on starting treatment for hypothyroidism which is easy to understand.
This is good advice. Also please read the part about Armour isn't the preferred brand. You don't have to tell your new doctor that you are using another brand because that might blow their mind. The reason I say your "new" doctor is you will probably need to shop around for someone much more qualified than that clown. I ended up finding my best doctor by calling every doctor that was on my insurance plan. I asked 2 simple questions just to rule out all of them that were either not experienced, or too closed minded. I asked the receptionist:
1, does the doc prescribe Armour or not?
2, does the doc have anyone on up to 3 or 4 grains, maybe even higher?
Good luck, you'll need it, and welcome to the revolution
Also you're going to need to do a 24 hour saliva cortisol (adrenal) test and also an iron panel. If your adrenals are sluggish, you have to start there. If your iron is low (you need a complete panel, there's 4 things) the NDT wont work right. You may have to get the adrenal test on your own, you can order the kit. That's what usually happens in the US
Haha..Ya, then you can be like me and self medicate. I order NDT also T3 without prescription. But you still need someone to order the tests. Im in the Philippines so I order my own tests..haha.
If it comes down to it, you can PM me and Ill give you the pharmacy
Hi Blake, I'm in the U.S. and fought for six years to get Armour and OFF Synthroid. This was fifteen years ago.
I've been reading TUK for a couple of years and suggesting to others exactly what you are doing.
Myself....I couldn't raise my FT3 or FT4 above minimum so I'm working on adrenals and ordered my own T3 for the last year. (MMD?) I think I'm making progress but haven't decided on testing. I think I need a doctor to request them even from Genova and even if I pay for them. That's my hangup.
I like the way you called it a revolution. I hope you are right.
Thanks. I'm curious, how many grains did you go up to on the NDT when you couldn't raise you FT3 or FT4 above minimum? Because what usually happens if you have adrenal problems or iron problems is you are still able to get your FT3 raised up, but it kind of back fires, you go hyper due to reverse T3. That's when T3 can be useful, but usually only if you can't get those other things straightened out. That's where I am, I'm on a combo. Did you go all the way up to 4 grains or more?
By the way, I don't think you want your FT4 very high, like you do your FT3. because if they are both high, that's when you get the reverse t3 problem
I agree with everything you said. Even in the U.S. and back when I was very ignorant even though I was reading Dr. Lowe's and Mary Shomon's websites, I think the endo kept my TSH at 3 or 4. I was only on about 100 mcg of Synthroid. Lots of muscle issues during that time and still do. I could only handle one grain of Armour but my TSH was reading 1.66 (current normal range is 1 to 3 so new doctor tried to get me down) yet both FT3 and FT4 were about .10 over the MINIMUM. My reverse T3 ratio instead of 20:1 was 10:1 so I decided to work on adrenals. I need to do the saliva test but I think I know already. My ferritin which should be 80 but is 151. So I really don't know what's going on. I can play golf unless it is 90 degrees and I'm about 12 pounds overweight,
so I guess I'll call myself satisfied for now. Adrenals take a long time.
There are some here at TUK who are or were taking 4 grains. CarolynB might be one but I'm not sure.
I take 25 mcg of Cytomel and occasionally add a tiny bit more.
Welcome to the forum John. You have already discovered that doctors are not very clued up and you need to fight your corner. But we are all here for you do don't be afraid to post any questions etc. We have all been there and understand. Its a lot to take in at first and the really frustrating thing it is a slow process. Hopefully you will see some improvement soon. Keep posting any results for comments and as Clutter has said always give the ranges, different labs have different ranges. Good luck!
Im a 28 yr old bloke. I had exactly same symptoms when I was 23.
As previous comment says, small dose of thyroxine can make symptoms worse.. As they did for me for years until I begged and begged to be put on q higher dose that kept my tsh <2 initially. Which cleared puffy eyes and main symptoms. But after 5 years I finally got my tsh <0.5 with associated fT3 and fT4 in safe range. And finally felt human.
You need to educate yourself on the disease. And take your health into your own hands. I wasted years of my life relying on generic NHS monitoring and treatment.
Everybody reacts differently to diff types of treatment so one size (NHS method) def does not fit all.
Play the game and fight for your health. It's the only way you will win.
The guidelines of the British Thyroid Association state that they should not prescribe levothyroxine until the TSH is 10. I wonder what planet they live on.
Oh Shaws really? 10.1!! how could they!! I well remember crawling around when my TSH was only around the 4 mark....I felt dreadful and had to work part time. 'Luckily' for me I only had 2 years of agony before it tipped past 4.7. Goodness help anyone who has to wait for it to reach over 10!! Madness.....then the endocrinologists wonder why some people end up self medicating!.
I agree with clutter in fact these doctor's are a shower of bastard's [sorry but it's true] you have to fight for everything,
dont be put of, i know when your not feeling well that's the last thing you want to do but that is part of it they know your ,
feeling like shit and still tell your blood;s are normal. I wish the bloody bbc or itv would make a programme, they could, name it the great thyroid scandel so many of us suffering when we don't have to' be firm tell that idiot of a gp you need your med's upping' even if have to go in once a week keep on at them. good luck and rember your not on your own.
I am absolutely furious and at the point where I just want to roll into a ball and cry.
I've just seen my doctor today and I have never dealt with someone so completely unwilling to listen at all.
So I went in to explain how I've been on my tablets for 4 weeks and feeling so much worse and drained of energy, she looked over my notes and said well I'm not sure why I prescribed you them as your TSH is within normal limits (6.5)
Then she was saying how she has no idea why I have all these symptoms as none of them seem to add up, which she tried telling me maybe I'm just depressed.
She refused to up my thyroxine dose from 25mcg as that would be 'dangerous' without knowing more.
Her only suggestion was to wait a month and get another blood test in which she's very sure my TSH will return to normal (which is a contradiction because she believes that 6.5 is normal.
I'm so angry I've just re-registered myself to a different doctors surgery, however it will take 2 weeks for my records to get through to them.
My fear is I will get to the new gp and he/she will side with my previous doctor and I will be in the complete same situation.
John I'm so sorry that your GP is so awful. Yes, you have probably done the right thing in changing GP but the sad truth is that whatever happens, they all read from the same set of guidelines. However some are more enlightened than others.
And why is it that when we are feeling sooo awful, you then have to fight with those who are supposed to make you well?
My suggestion is that you print out some of the helpful pages that people here will link you to, and take them with you to your first appointment, so that you can explain to the new doctor if you start to run up against this again, that you have done your research, and they are talking b*ll*cks. I wish I'd done this with the endo I'd seen.
The others are right -ask for a print out of all your blood test results. You also need to get your new GP to test you for thyroid anti-bodies TPO & TPA. Go onto Thyroid UK and print out their Symptom checklist and fill in to give to your new GP -this should help him/her to see hat the symptoms you are experiencing are thyroid related. NICE guidelines do say that GP's are supposed to take into account your symptoms as well as blood test results....sadly not many do.
You be wise to invest in a good book about hypothyroidism. Dr Peatfield's book called Living with Hypothyroidism is a good resource book.
Lastly 25mcg of Levothyroxine is a very very low dose -usually given to people as a starter dose who have heart conditions. The normal starter dose is 50mcg and should be reviewed every 6 weeks until you are at an optimum dose for you. Low starter doses can make you feel worse as they unfortunately can inhibit the the pituitary at sending out the the TSH signal to your thyroid- this means your thyroid will produce even less then it was making you feel worse as what you are taking is not replacing the loss of thyroid hormones. therefore as you start treatment your GP should be looking at your Ft4 & Ft3 levels -these are two important thyroid hormones. Am sad to say that only Ft4 is the one that the labs will test for usually......
Sadly GP's know extremely little about this very common occurring condition -I believe they only have 3 hours in the 5 year training on thyroid conditions....so extremely little training......so educating your self up to become an 'expert patient' is key to your success in getting better.
I was just wondering if the blood tests actually flagged up anything else or was it just specifically to look for the Thyroid readings?
The reason I ask is because, although you're quite young, your symptoms do also sound suspiciously like Diabetes. I don't want to frighten you but it's in my family. May I suggest that you get a Glucose Fasting Test done asap to rule it out.
Sometimes the doctors attempt to rule out other possibilities before treating for what's left. It's not clear from your post whether you doctor did that or not.
Don't give up just yet. The sooner you know what it is for sure, the sooner you can actively address the condition, get some respite and get your life back. Unfortunately, when we find ourselves in these situations, it becomes clear that the only one who's really going to fight your corner is YOU so please don't give up on Yourself and your quality of life. Fight for a diagnosis. It's your right!
Let us know how you get on and don't forget that we're all rooting for you as well.
Wishing you a speedy diagnosis and better care management
Did you get a printout of your results, and if so, does it say on there what the 'normal' range is supposed to be? My GPs don't seem very proactive as far as hypo is concerned, but I do know that my printout definitely has a 'normal range' of 0.35 - 4.5 miu/L clearly marked. I thought this was supposed to be national.
Ask for printouts of your previous readings so you can at least take them along to the new GP. You are entitled to copies of your results.
Having gone through something very similar, though for much, much longer, at least 7 years, my advice to be not to wait until TSH creeps up to 8 like mine. Get the iron, Ferritin, vitamin D, B12 and folate tested, and get copy of results and post up here, if in low range (which GP's will consider normal) start supplementing to increase levels (using advice on how to do so on this forum). After a couple of months, get re-tested and if levels at appropriate level, self-medicate with NDT, which gives you T3 as well as T4. Well that's what I did, and just started on 30mg x day Naturethroid a week and a half ago, and already feeling better. All my symptoms exactly as you describe, plus additional ones for having this condition for so long. If you have the energy to find a GP who has the necessary know how, please do, but for me I was sssooo tired by TSH 8 time, I couldn't go that route any longer. Tried one other GP just as bad as the first one.
Thank you to everyone for your help! You've got me feeling a lot better about the situation.
My plan of action is;
Tommorow phone current doctors and request print outs of past blood tests
Collect print outs
Register to new doctors
Then next week sometime;
Fill in the symptoms form
See a new GP and explain that 25 mcg is not sufficient (then cross my fingers)
As a worse case is there any way to artificially raise my TSH to above 10 to actually get a doctor to sit up and take notice, maybe double dose for a weeks (50 mcg) and then stop taking it for a week or 2, or would this not work?
But once again guys just hearing your stories and reassurances have really gave me a brighter outlook on this
Hi I have under active thyroid too. Have twenty years. Docs maintain it by blood test every 6 months. But if there it unbalance then bloods are done every month.
You only find out by having a few blood done over a few months if it thyroid problem. Then if it is its treed. You still have blood's done every six months to keep it in check. The thyroid changes don't happen quickly as should know that is because it can take a few month to show any changes. and your sytoms don't show the changes very fast. The physical changes take along time to show too.
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