How many male members on here: I am currently on... - Thyroid UK

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How many male members on here

26 Replies

I am currently on a trial of Thyroxin (25mg) as my doctor still doesn't believe that my symptoms are related to my Thyroid despite having so many symptoms that match. My last blood test results are below:-

Thyroid function test

(RH)-Dr/nurse will discuss result at next routine appt

Serum TSH level OR 6.57 mu/L (0.3-4.7)

Borderline hypothyroid.

Refer to TRAMP thyroid guidelines.

Serum free T4 level 14.2 pmol/L (9.5-21.5)

After spending lots of time reading these boards, it occurred to me that as a male I am in the minority. Are there any other male members around and how are you getting on with your GP and are you actually getting good treatment?

Thanks

Chris

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26 Replies

I have been on 25mg for a month now and need to arrange a blood test in a few weeks time. I asked him to sign my form so I could get a free prescription and he refused as he said I was on a trial and no more. He is going to take me off them after the blood test and see how I feel. This is total BS, I've been telling him for three years of all my symptoms and all I ever get is you're stressed, depressed, anxious, blah blah blah. I am not any of thses things.

I ended up getting a sleep study done and they picked up the TSH levels. I have lost a lot of confidence with my GP, he just thinks I am a hypochondriac I am sure.

Clutter profile image
Clutter in reply to

Chris, about 1 in 9 or 10 hypothyroid patients are male. Dunno how many hypothyroid males are forum members though.

I think you should see a more clued up GP at your practice or change surgery. It looks like you will struggle to get your GP to treat you optimally ie according to your clinical symptoms and not just your thyroid blood results. nhs.uk/chq/Pages/1088.aspx

cc120 profile image
cc120 in reply to

Do pursue the GP route in the way suggested, but if you run out of energy as I did, consider self-medicating with NDT.

Then follow the following info regarding NDT dosage:

tpauk.com/forum/content.php...

johnnyxs profile image
johnnyxs in reply to

Hi Chris

I was a male last time I looked although i've recently discovered that the reason that I have had no motivation or energy and felt fatigued for the past 10 years was due to my Testosterone being off the chart low at 2 .! (threshold 8.3-28.7 )

Like you my Doctor has consistantly refused to take all my symtoms seriously for over 10 years.

I changed surgery 3x times and Doctors twice in my present practice trying to find some to take me seriously.

I have lost the best 10 years of my life by not forcing my Doctor to take me seriously and refer me to a Endocrinologist.

Change your Doctor change surgery if you have to . Don't risk throwing your life away. Make a list of all your symptoms and send them by registered post to your Doctor so that you know they will be put on your medical records and taken seriously

Here is my story...don't go the same way as me through medical ignorance......................

Never believe it when a Doctor tells you a result is 'Normal' ask to see the results

My Doctor said that my fasting blood sugar result was normal at 8.7 mmol !

Six months later on retest he lied and said that my result was 5 mmol . He couldn't find the Lab test result because he had vetoed some of my blood tests incl like Vit D and blood sugar ,

Two months later I collapsed with Diabetes and blood sugar of 28 mmol !

I insisted on a referral to an endo who a few weeks later found that I had Hypertension ,Hypergonadism, Macro prolactinoma ( huge tumour on my Pitutary gland, ) Adrenal fatigue and possible Liver and Pancreas problems. This is all in addition to my Hypothyroidism.

I know that this is an extreme case but I believe my Dr had ignored all my symptoms for over 10 years including pre Diabetes.

Barrister profile image
Barrister

See a different GP. Even on the labs own reference ranges you are hypothyroid so he shouldn't be treating you in this manner. Clemmie

Hennerton profile image
Hennerton

25 mcg of Thyroxine is almost as bad as nothing, as it has probably stopped your own thyroid from producing anything, so you will be no better off. Do as everyone suggests and change doctors. This one will ever be good for you.

greygoose profile image
greygoose in reply toHennerton

You might even be worse off! Imagine your thyroid was producing 30 mcg of thyroxine. You start taking 25. Your thyroid stops producing because of it so that instead of getting a total of 55 mcg, as your doctor possibly thinks, you will only be getting the 25 you're taking - a reduction of 5!

Or, it could be a deliberate strategy on his part to make you feel worse so that you believe the thyroxine doesn't help you and you aren't really hypo! They're cunning b****rs these doctors!!! lol

Hugs, Grey

honey53bee profile image
honey53bee

Hi Chris - don't despair and don't give up. You're not a hypochondriac. You've succeeded in getting a trial so you've persuaded your GP this far and you could assume there must be a seed of doubt in his mind, otherwise I doubt he'd have agreed to the trial in the first place, given the fuss they make about thyroxine. Your TSH alone is squealing unhappy thyroid, let alone the rest and not forgetting the various vitamins and minerals to be added into the equation. I'm a great believer in getting things down on paper when dealing with medics and getting them logged on your medical records, so they're there as a constant reminder and hard to ignore. When I was fighting to get my hypothyroid acknowledged, I printed off a comprehensive symptom list from the thyroid website, ticked off the relevant things and took it with me every time I saw the doctor. I made a point of putting it in front of him and made sure he looked at it, even when he flicked it over his desk. I thought no mate, it's not going away and neither am I. I also asked for it to go on my record. Eventually I think this battle of wills was irritating him so much, he finally agreed to a trial but like you, I couldn't get a free prescription either. Don't worry. Now you've been taking the thyroxine, you can tell him how you've felt since you started it. Again, put it in writing if necessary with your original symptoms. Hopefully you're feeling some benefits which shows your body needs it. Ironically, I thought that it might be easier getting a diagnosis if you're a man because with us females you tend to be branded hysterical, hormonal, menopausal, attention seeking, la, la, la. With men they can't spin the same lines. It's all part of the cat and mouse game you play in Thyroid Land. You could also use the sleep study as a lever to progress your case for treatment. It's all part of the evidence. The more you build up, the harder it is to dismiss it. I've noticed that GPs tend to get a bit rattled (professional pride I think) if another 'peer group' practitioner muscles in on their patient - their territory - and all of a sudden, they want to be very helpful. Of course, if you've lost confidence completely, see another doctor in the practice, or, if you have to, change surgeries. However, in the meantime, you need to get your blood tests arranged and see what the results say, along with the other evidence you're building up. It's all part of the journey! Best wishes.

sheenah profile image
sheenah

I completely concur with Honey Bee - get it in writing - write letters, lists - sock it to 'em so that it is in your files - you will see a difference in attitude let them see that the "Doctors know best" rubbish is not working - and keep posting and asking questions on this forum!! Good Luck! xx

Thank you all so much. I feel overwhelmed and extremely frustrated. I just don't understand why this is so difficult. I did what Honey53Bee suggested the last time I saw him, I had a printed list of symtoms which he didn't even look at when I gave him it.

To make this even more frustrating, I only have half a thyroid anyway as I had half removed two years ago when I had a nodule which they couldn't get a good test on via a biopsy; they took half away and it was clear.

Chris

honey53bee profile image
honey53bee in reply to

Chris, Maybe I'm having a foggy brain moment here, but does this doctor actually know you only have half a thyroid? Did you have a different doc then? I mention this because sometimes we assume they've read our notes and have joined up the dots (because they're supposed to be clever) and then discover they've just read the last line of the last entry on the notes. If he is FULLY aware of your history, I can't get my head round his attitude. It truly beggars belief. In the meantime, all the more reason to put it in writing and shove it under his nose again as an aide memoire for him to scroll back a bit further on his records. Re. the sleep study, did you have this done via a consultant who, as I said last time, perhaps you could use as an alternative route to getting satisfaction/they could write to the GP, etc. I decided to think outside the box and used my rheumatologist to find me an endocrinologist, who found me a radiographer, who wrote to the endo, who wrote to my GP, whose little feathers were so ruffled by this 'pretender' muscling in on his patch, finally stirred himself into action. Methinks we live in crazy times! I'm glad you're going to "drive" things on. Keep on truckin'!

in reply tohoney53bee

I'm glad it's not just me then, yes he knows and I even mentioned it the last time I was in. That's when he said he planned on taking me off the meds to see if they made any difference. This is the reason I am perplexed by it all.

helvella profile image
helvellaAdministrator

Chris,

There are not only fellow male members, there's even a male administrator! :-)

For myself, my TSH never even got as high as yours - only the tiniest bit over 5 and the local top of TSH range. However, had it been me alone, I doubt I would have had the slightest idea thyroid was the cause of the disparate symptoms I had. My partner's thyroid journey informed me and, far more importantly, her. It was her who persuaded me to ask for a thyroid test for plantar fasciitis. Who suggested that ear popping could be a symptom. (The list of symptoms was surprisingly long. Several were investigated to some extent but never resolved.) I intellectually knew all this but still it was difficult to take on board. Through this my TSH rose from 2.6 to 5.something.

My doctor would probably never have given me any TSH test without being asked. (Actually, I saw three or four doctors over the time.)

I started on 25, then 50, 75 and now (and for quite a while) 100.

My doctor has almost nothing to do with my treatment except: a) I get an annual test (for reasons I have not fathomed, I get TSH plus liver function and urea and electrolytes) and have to have a follow up appointment; b) I collect my prescription every 56 days; c) there is no c. Had my test the other day, TSH = 1.26.

I do not use my NHS prescription to get UK levothyroxine, preferring to buy my own levothyroxine from Germany. (Though I scan my prescription and send that file to Germany.) If I felt I needed to adjust my dose, I would be happy enough to do so.

I intend asking for a longer period prescription to reduce postage costs and improve my convenience.

My symptoms have all reduced, some to the point of being almost totally forgotten.

Rod

Rod,

Thank you for replying, the ear popping caught my attention, I suffer with this all the time too. I am going to drive this on and if I don't get any satisfaction I'm going to change GPs and do whatever it takes.

This forum is a lifeline for me.

Chris

helvella profile image
helvellaAdministrator in reply to

(If you click on the yellow or orange Reply on the post you are replying to, the person gets an alert email! :-) )

I went from driving across he mountains Wales (regularly) without any apparent problem to getting unpleasant ear popping with elevations of only 200 or 300 feet.

Ability to cope with oncoming headlamps deteriorated.

Eyesight generally worsened - poorer focussing, poorer 3D perception, poorer colour perception.

My tongue became swollen and uncomfortable - especially the tip which kept rubbing on my teeth.

My hair growth rate reduced and, probably, lost colour (that was happening anyway!). My eyebrows did lose some of the outer hairs.

My sleep was impaired - I'd go to bed, often fall asleep quickly, then waken up and be unable to sleep for hours. Even an otherwise good night was not refreshing as it should be.

And the list goes on.

25 mcg will not be enough, I am pretty sure. I noticed 25 mcg, just, but needed at least 75 to really start to improve.

Rod

in reply tohelvella

Yep this sounds so familiar, my left eye has poor vision and floaters all the time, I'm exhausted from start to the end of the day. I get headaches constantly, my tongue is always sore and on and on it goes.

I've been like this for three years now and been told I've got depression, stress, anxiety etc etc.

Chris

helvella profile image
helvellaAdministrator in reply to

Yes, floaters I forgot to mention. Am convinced that both the number/size/density of them increases as well as there being a reduced ability to cope with them - in the way that healthy people manage.

The idea of your doctor taking you off the 25mcg is ridiculous. He does not know what he is doing. Thyroid hormone is NOT like antacids, painkillers, etc. It is unique and needs to be dosed appropriately.

Rod

silverfox7 profile image
silverfox7 in reply to

Can I just say Chris that if you get floaters and flashes as well then that is different and you must visit the eye department to get it checked out.

in reply tosilverfox7

Already have and everything is fine

silverfox7 profile image
silverfox7 in reply to

Good. I have experience Posterior Vitrous Detachment in both eyes so I know the importance of getting things checked promptly

HarryE profile image
HarryE

Chris, I'm a girl (sorry!) but I can tell you my TSH never got above 4 and I was really really ill, and had 4 months off sick. So I went down the self treatment route and all of my 47, at last count, symptoms have totally gone. So it is doable, with or without a GP! Obviously better with, especially financially, but there are options.

Bob00752 profile image
Bob00752

Hi Chris! Yes there are a few males on this website. I didn't get a low thyroid diagnosis until my blood glucose hit the Diabetes Type 2 threshold in 2013. 18 months ago I was put on Metformin for diabetes, 50 mcg Levothyroxin plus statins for cholesterol and I was already on Ramipril for high blood pressure (I'd previously had over 10 years on beta blockers and thiazides for BP, a combination that might have helped the diabetes!).

I'm currently off the diabetes meds (diet and exercise and a loss of two stone so BMI dropped from 28 to 23 over a year), trying to find vegetables I like that don't depress my thyroid. My levo is now up to 75 mcg and although still on the statins and BP. I would say the main lessons have been portion control and replacement of deli meat by oily fish, eggs, cheese - so my feeble attempt at a mediterranean diet. Cholesterol is down and good cholesterol is up, but nothing seems to help the thyroid levels apart from the levi replacement pills. Aged 65 (and 3 qtrs) I feel better than before the diabetes/thyroid diagnosis. Both CAN be autoimmune diseases though I suspect the diabetes was weight and diet related. I suspect a general malaise on the lines of metabolic syndrome (or maybe it should be renamed metabloke syndrome for us males!)

Good luck. Regards. Bob

cc120 profile image
cc120

My laboratory, stated borderline hypothyroidism, annual review for TSH 8. My ferritin was low and cholestrol high.

stephensmith profile image
stephensmith

Chris, you would have more success with a witch doctor!! If you can change doctors. I changed to a woman doctor who had more of an understanding. During a doctors training they are told any TSH figure under 10 is ok!!

I have managed yo work with my GP and private endo to eventually get on T3 only, however you can waste a significant period of your life banging your he'd against a brick wall. Good luck

cc120 profile image
cc120

Thank you reallyfedup123, thanks to you and other members, based on this and other results, it was pointed out to me that I'm definitely hypothyroid. The funny thing is, 7 years earlier there is a reading for 'TSH 7.5, borderline repeat in 3 - 6 months', which GP didn't inform me about.

stuartwwhouse profile image
stuartwwhouse

Chris

I am male, and got diagnosed in 2011 after months of badgering the GP .

I had a tsh of 12 by the time he acknowledged it to be hypothyroidism. Even though previous tests showed levels of tsh around 6 for a few years.

I was started on 25mch Levo for about 18 months with no increases.

I finally went to my GP armed with lots of evidence and the increases of Levo came after that (plus lots of direct chat with him and insisting )

Eventually after increases to 150mcg the tsh started to comedown.

After 200mcg tsh was in range but symtoms were not good.

I would set a reminder on my phone for 8 weeks after a med increase and badger the receptionist for new bloods and an appointment to keep it from dragging on, and make appointments when symptoms were bad so the doctor didn't just forget about me.

I got a trial of 10mcg t3 in May this year after insisting an endo referral

I am now repeating the cycle of demanding med increases and I'm taking 150 mcg Levo 30 mcg liothyronine

T3 has taken the edge off the symptoms but I'm definitely not fixed

In my experience of it ( 3 years and counting) knowledge is power and don't accept what they tell you if you aren't happy with it.

From what I have read guys do seem to need a lot more meds to help them.

Good luck in your journey

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