chat with dr : just had a phone call with the dr... - Thyroid UK

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Kowbie profile image
69 Replies

just had a phone call with the dr she is saying I’m on far to much replacement medication I said my t4 and t3 are not over , she said it’s probably that that is making my liver unwell I said why is it then that I gave my results to and I said thyroid uk and they said you could do with a bit more t4 , she said they wouldn’t so I said you won’t give me any more t4 then . Certainly not , I don’t know if you can buy any without a prescription, don’t know what to do , I’m on medication for restless leg syndrome but it’s getting worse , hope someone has some ideas for me thankyou for listening

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Kowbie
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SlowDragon profile image
SlowDragonAdministrator

Restless legs often low magnesium or low iron/ferritin

What vitamin supplements are you taking

Need full iron panel test for anaemia and retest 3-4 times a year if supplementing any iron

It’s possible to have high ferritin but low iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

What were your most recent thyroid results

And vitamin D, folate and B12 results

Kowbie profile image
Kowbie in reply toSlowDragon

hello slow dragon hope your keeping well yourself ,my serum iron is 12.1 (5.83-34.5)

Ferritin 141 no range

Vit b12 ( 937(197-771)

Folate 20 (3-26.8)

Magnesium 0.86 (0.7-1)

Vit d 121 (50-140)

Tsh 0.02 (0.27-4.2)

T4 17.3 (10.5-22)

T3 4.4 (3,1-6.8 )

I’m taking vit d. K2. B12, folate, magnesium, sink and selenium i di take some iron but was a bit worried about it so have stopped . Thankyou for getting back to me

SlowDragon profile image
SlowDragonAdministrator in reply toKowbie

So your iron is quite low

But ferritin is quite high

Have you had CRP levels tested for inflammation

High CRP can falsely increase ferritin

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

You look like you have room to work on iron by taking iron supplements

Certainly increase iron rich foods in your diet

retest full iron panel every 3-4 months if taking any iron supplements

Kowbie profile image
Kowbie in reply toSlowDragon

Thankyou my crp had been very high but has come down from that medichecks wrang me up to tell me to go to the drs which I did they did the test and said it’s fine I thought it had come down quite quickly but there you are , I appreciate your replies thankyou when my serum iron was 10 they still said it was ok thanks again

SlowDragon profile image
SlowDragonAdministrator in reply toKowbie

So you need to work on improving low iron

Also look at getting T3 prescribed

You won’t get anywhere with GP

Will need thyroid specialist

Kowbie profile image
Kowbie in reply toSlowDragon

Thankyou slowdragon for all your help appreciated everything you’ve said , and will do my best

greygoose profile image
greygoose

Are we talking about these results here:

tsh 0.005. (0.27-4.2) These were done 31 January

T4 17.1. (12-22)

T3 4.5 (3.1-6.8)

Vit d 89 (50-250)

Vit b12 76 (37.5-188)

Folate 30.2 (7-35)

Ferritin 247 (30-640)

Crp 86 (3)

FT4 51.00% through the range, FT3 only 37.84%! So, not, you're not taking too much levo. Your doctor is only looking at the TSH - which is very low - and she doesn't know enough about thyroid to know better. This is the problem so many of us have. Doctors only know about - or think they know about - the TSH. They don't understand how thyroid hormones work or the feed-back loop, or anything.

Yes, you can buy levo on-line without a prescription, but I can't tell you where because I don't take it.

Restless leg syndrome is usually due to low ferritin. And your ferritin is probably very low. Although we can't know how low because your CRP is high, giving you a false 'high' ferritin. What you need is a full iron panel to see what's going on. Although, by the sound of it, I doubt if you'd get that from your GP!

Kowbie profile image
Kowbie in reply togreygoose

Thankyou for replying I’ve just written the results down 16 may for most of them the dr just wouldn’t listen I tried to tell her that t 3/ 4 were not over but she said you should listen and trust your dr , but I don’t know it does get you down a lot she was going on about my weight I said I’ve tried but nothing happens thanks again for getting back to me

greygoose profile image
greygoose in reply toKowbie

Trust your doctor! Ha! When she talks rubbish like that? Not a hope. She has no idea what she's talking about. And, with that low FT3 you're not going to lose weight.

So, your serum iron is low, and that's more than likely what's causing the Restless Legs. But I wouldn't expect a GP to know that. They know even less about nutrients than they do about thyroid!

Kowbie profile image
Kowbie in reply togreygoose

Your right there I don’t know what to do try to find some more t4 , or put some more t3 up could you give me your personal thoughts please

greygoose profile image
greygoose in reply toKowbie

In the first instance, if I were you, I'd increase the levo. If you want to buy levo without a prescription, write another post asking just that, and then people who know where to get it will PM you with their trusted sources.

However, if someone give you a link, cheque with an adming that it is genuine, because we get a lot of scammers on here. :)

Kowbie profile image
Kowbie in reply togreygoose

Thankyou greygoose for that I will do , what would I do about dr wouldn’t think they will do a blood test until next year , what would I say to them thanks ever so much for your help and have a good day

greygoose profile image
greygoose in reply toKowbie

She probably won't even notice the difference. They just don't look at the Frees. And as your TSH is already suppressed, that not going to change. So, unless directly asked, I wouldn't say anything.

Kowbie profile image
Kowbie in reply togreygoose

Oh ok thanks very much for your help

Nat107 profile image
Nat107 in reply togreygoose

Hi grey sorry to jump on kowbies post, but I’m on 100 t4 & 30 liothyrine split morning & tea time, just this past week started feeling a bit of hand tremor like going hyper but without all the other symptoms of weight loss and energy, just hand tremor, would you say I need a increase or decrease in t4 or t3

greygoose profile image
greygoose in reply toNat107

I wouldn't say anything without seeing a blood test result.

However, for myself, that is the only over-medicated symptom I get, the hand tremor - certainly not the weight-loss! lol But, if I were you, I'd get a test done and then post the results. :)

Nat107 profile image
Nat107 in reply togreygoose

Thank you grey im getting my bloods done on Monday so will let you no results before I speak to my endo so I’m prepared

greygoose profile image
greygoose in reply toNat107

OK, start a new post for your results so that they don't get lost or confused with anything else. :)

Nat107 profile image
Nat107 in reply togreygoose

I shall do that 👍

sparkly profile image
sparkly

Is it your liver ALT's that is raised do you know? There is a strong connection between fatty liver disease and hypothyroidism. Your bloods do not show you are over medicated and actually t3 low but others will help with that.I started with fatty liver after diagnosed with thyroid issues and always had raised crp levels and high ferritin.

This gp obviously isn't familiar with this issue. I wouldn't let her reduce your thyroid meds. If it is raised liver enzymes that keep showing then an ultrasound will confirm fatty liver, it did for me.

Kowbie profile image
Kowbie in reply tosparkly

Hello sparkly what a lovely name, do you mean Aline aminotransferase it’s

51 (0-33 or Alk phos which is 163 (30-130) I know I have a fatty liver and went for a scan a couple of weeks ago, I just don’t know what to do it’s a headache

sparkly profile image
sparkly in reply toKowbie

Yes it can be quite a shock when you first are told. For me I'd lived vlc, low fat, low carb diet for over 15 years so being told I had fatty liver was annoying but I was overweight, just can't lose it due to metabolism being on the floor.I did drink alcohol but only of a weekend and not excessive. Was referred to hepatology, stopped all alcohol for 6 months but still raised alt's so alcohol was ruled out.

Last January I changed a lot. I was able to exercise, starting weight training. I changed my diet from the above to increase calories, eating carbs, good far, high protein and lots of water

My sleep is good due to taking utrogestan, part of my hrt.

I only lost a couple of lb at first but felt a lot better in myself. I feel things changed when after 5 months I started taking berberine supplement and ever so slowly started losing 1lb a month. This is also when my iffy bloods started to drop into normal ranges.

Liver, cholesterol, ferritin normal also bp normal. I know the exercise will be major player in all that but having just started back on berberine I lost a couple of lb very easily.

Can't say for certain berberine helped as started a different brand of t3 same week but knowing I likely had insulin resistance and metabolism syndrome and having read up on benefits of berberine for all the above I feel it's helped sort things out and my endo and gp were happy for me to take.

Worth having a read up about

Kowbie profile image
Kowbie in reply tosparkly

That’s strange but I’ve just started taking berberine yesterday , oh I hope it does something thankyou for your replies have a good day

Nat107 profile image
Nat107

hi what medication are you on for restless legs please, I take magnesium every evening and doesn’t help at all, what dose t4 & t3 are you for dr to say over medicated, looks like your bloods are good place but depends how you feel, is dr going on low Tsh as many of us feel better when it’s low anyway, if you are taking t3 what dose do you take please as my t4 is low although t3 does make it drop and doesn’t seem to go any higher im on 100 levo & 30 t3, your t4 looks quite good if you are taking combo t4/t3

Kowbie profile image
Kowbie in reply toNat107

Hello , I take magnesium every night also on ropinerole but just lately it’s not just been at night I’m getting it day time as well I’m on 150 thyroxine and I self medicate t3 37-1/2 , I don’t know whether to try and find some t4 to add or up my t3 , as the last time I wrote on here was told to up t4 thankyou

sparkly profile image
sparkly in reply toKowbie

Something definitely doesn't look right if on 37.50mcg of t3 along with 150 t4 and your ft4 is 17. Ft4 drops when taking t3 and would have thought it be a lot lower. Hope someone more knowledgeable will pick up on that

Kowbie profile image
Kowbie in reply tosparkly

Thankyou I hope so as I don’t know bye for now

Nat107 profile image
Nat107

thank you, dr said I can try medication for restless legs once my blood pressure is lower after starting medication in September, don’t feel magnesium alone helps me, it is so irritating so if your yeti g it during day too it must be awful for you. I wouldn’t no what to try to up your dose either t4 or t3 but many on here I’m sure will advise as I was feeling a bit hand tremors and didn't no if i should reduce t3 or increase levo so im bit same as you at the moment, definitely ask for a change of meds for you restless legs though as really affects quality of life

Kowbie profile image
Kowbie in reply toNat107

It certainly does my dr is going on tsh as it’s 0.02 but it’s been like that for years and I’m not dead yet because of it hope you get sorted out with restless legs soon it can send you potty sometimes it’s in one leg then when that one stops the other one takes over , nice talking with you

Nat107 profile image
Nat107 in reply toKowbie

Nice talking to you too, I hope you get the help you need lovely

Kowbie profile image
Kowbie in reply toNat107

Thankyou have a good day

Nat107 profile image
Nat107 in reply toKowbie

You too

jimh111 profile image
jimh111

Your fT3 looks weird if you are on 150 LT4 plus 37.5 mcg LT3. Did you leave too long between your last dose of hormone and having the blood taken? With T3 medication it is important to have the blood taken roughly half-way between doses but no earlier than four hours after the last dose. Leaving a long time after the last dose will give a false low fT3 result.

Kowbie profile image
Kowbie in reply tojimh111

I’ve just realised I was on 31 1/4 t3 when that blood was taken I upped it another 6 1/4 making it 37 1/2 as I was told I could put my t4 up a bit but knew the dr wouldn’t do that so I added that bit of t3 sorry about that I had forgotten, but I also did take it wrong I normally take them all together and I did that morning, then realised I should have split t3 so my mistake

jimh111 profile image
jimh111 in reply toKowbie

How long after your last dose was the blood taken?

Kowbie profile image
Kowbie in reply tojimh111

I took t3 with thyroxine so 24 hours

jimh111 profile image
jimh111 in reply toKowbie

That's too long a gap, half of your T3 will have gone after 24 hours. There's no research into the best timing but it seems reasonable to me to aim to have the blood taken around half way between T3 doses. That should give a rough guide to average fT3 levels.

If you take T3 twice daily after six hours there would be 84% of the T3 left. So, as a very rough guide you should multiply your fT3 figure by 84/50 to get an idea of your "true" fT3. This would put your fT3 at around 7.5.

Kowbie profile image
Kowbie in reply tojimh111

Oh ok thankyou , I’ll make sure I do it right the next time ,thankyou so much

jimh111 profile image
jimh111 in reply toKowbie

I've noticed that someone else mentioned taking T3 twice daily so my calculation maybe wrong. When do you normally take your T3 (NDT)?

Kowbie profile image
Kowbie in reply tojimh111

I normally take it first thing in the morning I did mean to split it but just woke up and took it, then it hit me I’d done wrong , thankyou for your help I appreciate it

jimh111 profile image
jimh111 in reply toKowbie

OK my numbers are realistic. So your TSH is probably reflecting your thyroid status. It depends on your signs and symptoms, what they are and how much they affect you. Sometimes we can be hypothyroid with perfectly normal hormones.By the way, I don't know what your liver problem is but I've never seen the liver affected by minor elevations of thyroid hormone. If your GP persists with this line I'd politely ask for details/ evidence.

Kowbie profile image
Kowbie in reply tojimh111

Thankyou for that I had a scan on my liver a couple of weeks ago they’ve said I have a fatty liver I don’t drink , well it was my birthday the other Saturday the day I had to go and have the scan , of all days ,anyway I had a spritzer probably be months before I have another one anyway they now want me to have something else done I think it was fibromyalgia, sorry to go on but thankyou for your help ,I thought I would just tell you my tsh has always been under even when I was on just t4 , how do they know that isn’t playing up , well thanks again

Nat107 profile image
Nat107 in reply toKowbie

My liver Lft’s have always been high since being hypo and no reason other than thyroid linking to it which I have read is connected hence lft test being done once a year when I get my yearly thyroid bloods checked mine are always abnormal

Kowbie profile image
Kowbie in reply toNat107

Thanks for that you would think they would know that then thanks again

jimh111 profile image
jimh111 in reply toKowbie

It could be that your pituitary doesn’t secrete as much TSH as it should for your combined fT3, fT4 levels. This is probably because you have been on high doses of thyroid hormone for some time, this can down regulate the “axis” which may or may not recover. This is why I always tell peo0le to try and get well with a normal TSH if possible, it avoids potential future problems.

It is believed hypothyroidism is a cause of fatty liver although this is not conclusive.

Fibromyalgia is a condition that affects “tender points” in the muscles causing chronic pain. Many hypothyroid patients are dumped into this diagnosis, the same happens with CFS/ME.

Nat107 profile image
Nat107 in reply tojimh111

I myself have ME/CFS and also later on followed fibromyalgia, after being active for years going to the gym every day and I already had hypothyroidism. ME is heightened by every task, as if it were a punishment which can last days or more for doing things I need to do when I have a bit of energy l to manage to do it. so amongst other things have to pace, with the help from the ME clinic fur 3 years, I had to medically retire from it, the exhaustion and pain is indescribable to show a true reflection of how I feel and it has destroyed my quality of life being restricted in everything I do both mentally & physically, Iv had this for years and doesn’t alter if my thyroid is stable, they are both awful conditions to have, I am at present helping a dna study for ME/CFS as i hope they can find something to give a little bit respite from this debilitating condition in the future

jimh111 profile image
jimh111 in reply toNat107

CFS/ME is dreadful and I suspect has many causes. I don’t think I made it clear enough that hypothyroid patients get wrongfully assigned to the CFS/ME diagnosis as a means of denying thyroid treatment.

Nat107 profile image
Nat107 in reply tojimh111

Yes they do I totally agree with that, and they shouldn’t use ME so flippantly as it is so debilitating and life changing, I already had hypothyroidism for years but they did do an intensive full blood panel consisting of many more blood tests Iv ever had before though to really investigate. It is really dangerous though to diagnose the wrong condition when we no untreated thyroid can lead to a thyroid storm which can cause death if not treated promptly, I was on the verge of one before I was finally diagnosed hyperthyroid after years of symptoms but blood always coming back as their normal, the days when no internet access to our medical record and blood results to see exactly how ‘normal’ they were in the range! it was absolutely awful getting to the point I reached and they never had any explanation for it and I was just left until thyroid went crazy and was in a terrible state. I feel sorry for anyone having trouble getting a thyroid diagnosis in order to start medication even if it doesn’t make you feel better it at least helps stop the fatal from happening if just left or misdiagnosed. Awful conditions to have, thyroid conditions and no one really understands unless in the same boat

Kowbie profile image
Kowbie in reply toNat107

Yeah your right there about people not knowing how your feeling because you probably look as if you’ve nothing wrong with you , I’ve found that I was talking to one of the drs and she said oh we don’t look at t3 so I said to her well let’s hope you never get a underactive thyroid because I think you’d be more interested then she never answered

Kowbie profile image
Kowbie in reply tojimh111

Oh I get you , what benefits them to do that you would think being a dr there suppose to be helping there patients the very best they can , it’s really bad

Kowbie profile image
Kowbie in reply toNat107

Oh I’m sorry to hear that, it makes you wonder what we’ve done to deserve these horrible diseases, do you get anything for the pain at the moment , I do hope your studies help you in the long run sending you a big cuddle x

Kowbie profile image
Kowbie in reply tojimh111

Thankyou very much for your knowledge, I suppose they’ll do what they want to do and blow the patient thanks again jimh111

Kowbie profile image
Kowbie

I’m in bury st edmunds I did see an endocrinologist here but ran out a couple of times while on the trial then he just stopped it nightmare surgery didn’t want the cost and don’t think the hospital did either

SlowDragon profile image
SlowDragonAdministrator in reply toKowbie

t3 is much cheaper now so more people are getting prescription on NHS

Kowbie profile image
Kowbie in reply toSlowDragon

This was only about 2 years ago so I don’t know but thanks

SlowDragon profile image
SlowDragonAdministrator in reply toKowbie

Price has been dropping from £268 per 28 tablets 20mcg when only one supplier had licence

Currently NHS paying £62 per 28 tablets 20mcg

healthunlocked.com/thyroidu...

Private prescription is between £60-£80 per 100 tablets for Thybon Henning 20mcg

Kowbie profile image
Kowbie in reply toSlowDragon

Thankyou is thybon henning t3 please

SlowDragon profile image
SlowDragonAdministrator

I’m on 150 thyroxine and I self medicate t3 37-1/2

This was not obvious that you already take T3

Does your GP know

Almost any dose T3 will lower or suppress TSG

Tsh 0.02 (0.27-4.2)

T4 17.3 (10.5-22)

T3 4.4 (3,1-6.8 )

Was last test as recommended

Last dose levothyroxine 24 hours before test

And day before test with dose divided into 3 doses spread across the day

Last 12.5mcg of T3 at 8-12 hours before test

Kowbie profile image
Kowbie in reply toSlowDragon

I seem to get so many different drs phone call I did mention it when I first started taking it ,so they should know I think I did the test wrong last time took all 24 hours befor I think I did put that on here when I posted

SlowDragon profile image
SlowDragonAdministrator in reply toKowbie

So Ft3 is falsely low if last dose 24 hours before test

Do you normally split your dose as 3 doses x 12.5mcg

You may be taking too much T3

Suggest you retest correctly as next step

Day before test

12.5mcg waking, 12.5mcg 2-3pm and 12.5mcg at 8pm

Retest 8am next morning

Kowbie profile image
Kowbie in reply toSlowDragon

Yes it was false I normally take them all at once that’s why I forgot to split them ,I suppose habit but will do it properly the next time I have my bloods done thanks so much for your help

jimh111 profile image
jimh111

Forgot to say I split my LT3 dose with half at bedtime. I find the bedtime dose enables good deep sleep with improved cognitive function.

Nat107 profile image
Nat107 in reply tojimh111

Can I ask what time you take your bedtime dose please as I have poor sleep and up every hour

jimh111 profile image
jimh111 in reply toNat107

I take it as I go to bed. When you take liothyronine your T3 levels peak around three hours later. My thoughts are that you get the T3 when you need it, during deep sleep when the brain is working hard to reorganise everything. There is also a recent study which I've misplaced that demonstrated that the brain clears out toxins during sleep.

Nat107 profile image
Nat107 in reply tojimh111

Thank you I might try moving my evening dose a bit later

Kowbie profile image
Kowbie in reply tojimh111

I suppose I’ve always thought take it in the morning so I’ve got a bit of energy, thinking if you take it at night you’ll be kept awake

Kowbie profile image
Kowbie in reply tojimh111

Oh I think I’ll try that thankyou I’ve never tried splitting doses I just thought if I take it all in the morning I know I’ve an empty stomach and I’m doing it right, but thanks I’ll try

jimh111 profile image
jimh111 in reply toKowbie

Liothyronine is very easily absorbed so you don't need to worry about an empty stomach just avoid a large meal.

Kowbie profile image
Kowbie in reply tojimh111

Ok thankyou it’s been nice talking with you

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