thyroid misery

Orla K

garhjw wrote: »

i cut all sugar, yeast, wheat, soya and caffeine out of my diet.

i also started taking ginseng, selenium, probiotic, b-complex and hemp oil. i also cut back on dairy substituting milk for coconut milk.

First off well done on getting it down. I'm not on any meds myself, I don't have a record of my highest TSH but I did get one done and it was somewhere around 9 as well but that was a few years ago, I think it went higher since then now it's just a bit above 'normal' but I still have some symptoms.

I just got to say I don't see the point in cutting out caffeine unless you drink tons of it, only have one cup and not every day but I would be stick to cutting out sugar, yeast, wheat, (I'll add gluten) and soya.

As for supplements
gingseng-do you know the reason why they recommended it?
selenium-some brazil nuts will do, it doesn't have to be many just 2/3
probiotic-people should take a good probiotic anyway also digestive enzymes
b-complex-I used to get a good B+C complex, no money at the moment
hemp oil-I wouldn't go for hemp oil I'd go for a good liquid fish oil/cod liver oil and eat more fish/sea food

garhjw

Orla K wrote: »

First off well done on getting it down. I'm not on any meds myself, I don't have a record of my highest TSH but I did get one done and it was somewhere around 9 as well but that was a few years ago, I think it went higher since then now it's just a bit above 'normal' but I still have some symptoms.

I just got to say I don't see the point in cutting out caffeine unless you drink tons of it, only have one cup and not every day but I would be stick to cutting out sugar, yeast, wheat, (I'll add gluten) and soya.

As for supplements
gingseng-do you know the reason why they recommended it?
selenium-some brazil nuts will do, it doesn't have to be many just 2/3
probiotic-people should take a good probiotic anyway also digestive enzymes
b-complex-I used to get a good B+C complex, no money at the moment
hemp oil-I wouldn't go for hemp oil I'd go for a good liquid fish oil/cod liver oil and eat more fish/sea food

can't rememeber why it was suggested i cut out caffeine but will find out and report back. i think it might have just been part of a total detox but will confirm.

ginseng - will find out.
i was taking both selenium and brazil nuts for snacks. i burn about 2000 calories in the gym 6 days a week so had to up my food intake when i cut out sugar....
hemp is rich in omega oils and i eat fish 3-4 times a week too

do you take any other supplements/vitamins or are there any other foods etc you avoid?

cltt97

Congrats garhjw, it's great that you managed to return to normal and that your hypothyroidism seemed to have been of the transient non-autoimmune sort. Keep up the healthy new lifestyle :-)

Orla K

garhjw wrote: »

can't rememeber why it was suggested i cut out caffeine but will find out and report back. i think it might have just been part of a total detox but will confirm.

ginseng - will find out.
i was taking both selenium and brazil nuts for snacks. i burn about 2000 calories in the gym 6 days a week so had to up my food intake when i cut out sugar....
hemp is rich in omega oils and i eat fish 3-4 times a week too

do you take any other supplements/vitamins or are there any other foods etc you avoid?

Detox sounds like it would be it and honestly I think detoxes are a load of bull, either eat the way you should eat or don't, but no flaffing around with 'detoxes' I just can't see the point.

I don't know if you needed that much selenium, I always just go for a few brazil nuts(which I've been soaking and drying in the oven)
With the gym thing is that burning 2000 kcal in the 6 days or 2000kcal a day(which would be over 3hrs high intensity cardio?)

Hemp isn't that great for omega oils fish oils are loads better the EPA/DHA is much better and I'd be wary of the extraction process in the hemp oil and it seems to have alot of omega 6 which you'd want to avoid.

As for what I take not much else I take something for my joints which I forget the name of.
As for food I mainly concentrate on what to eat rather than what not to eat, I'd eat plenty of veg and meat, try to get enough fish in during the week, preferably oily fish. I make sure to get fats into my diet, but this is where it get onto what not to eat, I don't go for veg/seed based oils. I do go for Tallow, lard, real butter, cold pressed olive oil(not to be used in cooking) and coconut oil. Oh and eat the whole egg and eat liver even if you don't like it, there's loads of stuff in it that's great for your health.

It's mostly just eat real food! If it's in a box it's probably not healthy and if it has a load of ingredients that aren't in your press or that you can't pronounce that's not healthy! (special k fits both categories:pac: I don't eat that wheat/gluten/sugar/chemicals it's really bad for you) or if something clams to he healthy it's generally not!

garhjw

Detox was to get all the sugar and yeast out of my system. too much beer and wine the last couple of years!

its 2000 calories per day - that about 40-50 mins high intensty cardio (usually running) followed by approx 50 mins resistance training.

i eat very well and have to take in a lot of protein due ot the amount of training i do - red meat, seeds and nuts (brazils and cashews mostly)

i take your point on the hemp oil. will look into changing that.

scary how much sugar there is in cereals - i eat organic wheat and sugar free muesli, which is actually the tastiest i have come across.

treecreeper

may i jump in and ask further advice as i now have my latest bloods and wonder if you could decipher them and if there are any other bloods i should be looking at.
i have very flaky skin and my ears are infected yet again.
i also have primary sjogrens syndrome and as the rheumy says that this does not impact on skin, i am wondering if my thryoid hypothryoidism is.
i am due over at endo at beaumont next month.
i am feeling very very poorly indeed at present.
here are the thyroid blood results: TSH:TSH: 4.82
T4:Free T4 17.26
T3: Total T3: 1.51
Folate FOL3:Folate: 11.3
Ferritin: FER: Ferritin: 11.30

i have other full blood counts that look pretty ok they say and my AST:AST: is 32 but i have gall stones.
would welcome your expert opinion and will post other bloods if you feel you wanna see, just dont want to overload!! thanks, great forum.

dubbo

Hi again, I have my appointment with the endocrinologist next week thank god,been feeling absolutely awful! Could anyone please give me any idea of what to expect at my appointment ? I have my list of symptoms made to prompt me but this is my first time seeing a consultant so any advice would be great :)thanks

robinph

Just got a copy of a letter from my diabetes consultant to my GP about my thyroid.

It almost read as if he was listing my marathon time being 15 minutes slower than I was aiming for as being a symptom.
I have today managed to get some more 25ug levothyroxine though and have been able to up the dose to 125ug. Hopefully this will have some effect and improve things a bit, but the current change of weather is messing me about a bit with the diabetes as well right now and getting more hypos with that.

cltt97

dubbo wrote: »

Could anyone please give me any idea of what to expect at my appointment ?

Well, I have seen two endocrinologists and one registrar, and what usually happens is you go in, they take your weight, your blood pressure, listen to your heart, check your reflexes, check your ankles (for swelling) and just touch your gland with their hands to see if they can feel any abnormalities. Then they will ask you how you feel and nod away while you list all your symptoms. Then they will tell you that you need Eltroxin and prescribe a starting dose, usually 25 or 50 mcg and tell you that you will need to have blood tests every 6 weeks to check the progress and gradually adjust the dose. This is the point where you should ask to have all these other blood tests done that have been discussed on this board numerous times. Whether they tell you that this is an easy condition to treat and that you will be absolutely fine in no time depends on the endocrinologist
Hope that helps!

cltt97

Treekeeper: The mods don't really like us discussing blood results, so won't really say too much about it, but most hospitals normal range for TSH is 0.4 to 4. I have come across a lot of people who feel only good if their TSH is almost suppressed, others are ok on a higher level, it is totally individual. Total T3 doesn't really tell much, it's free T3 you need to check. I don't know what units your folate and ferritin are, but they do look a bit on the strange side, they are also the same, so maybe a mistake? In any case, I would go back to your doctor and ask if they wouldn't want to consider an iron status test. Would also ask for B12.

Re your sjogrens, I think it is not uncommon to co-occur with Hashimotos. I for example get extremely dry eyes if my levels go off kilter, someone else on this forum said it's the same for them, so I think thyroid hormone definitely influences that side of things, too.

treecreeper

i appreciate getting an understanding of how to read ones own bloods, not necessarily diagnostics here.
i am deaf, very and have word discrimmination so when i try to piece together stuff written down it really does help.
long tracts do tend to throw me now as i am so poorly, this way i can try to take bite by bite and more understanding.
i am by no means stupid but need this type of input and really appreciate it.
ok, here again to the questions asked.

I will type verbatim what the folate and ferritin results say, cos i dont know how to read it...
FOLATE
sample type SERUM
Cliical observations NO CLINICAL DETAILS
FOL3:FOLATE 11.3 nmol/L 7.0-46.4
FERRITIN
skip sampe and clinical as the same
FER:Ferritin 11.30 nmol 10.00-204.00

Only see Free T4 no Free T3
Vit B12 is always high as due to crohns disease i get this by injection and i have always been worried that its consistently high and all they say 'ah it doesnt matter, you cannot overdose on vit b12!' if so why have a value at all if it doesnt matter!
here it is....760 pmol/L 139-651

Total Protein is 66
C-Reactive protein 66

Ana 400
tell me what hieroglyph is used for Iron? cannot find it, except in the local railway!
thanks

treecreeper

C-Reactive protein should read <5
and thanks again, smilie plus

RubyGirl

Got my vit D blood results back today and I need to go in on Tuesday to get injections and get blood's done again after 8 wks.

Please someone tell me this will help with the tiredness?

chessguy

@garhjw foods to avoid etc and supplements see my previous posts.


@ruby girl vit D will help , often when vit D is low vit B12 will also be low,they work in Tandem.

In Japan if B12 is below 500 they supplement with vitamins, that's how important it is.


For people with hypothyroidism or Diabetes I have read studies where they mention vit B12 range should be between 500 and 750.

Vit D is actually like a hormone rather than a vitamin.SO its critical.


If you see my previous posts I mention the supplements I take and why I select them , I am particular over what I take.

goodluck
chessguy

dubbo

Hi everyone,I saw my endocrinologist today and was put on a low dose 25mg :)I am classed as subclinical hypothyroid because elevated tsh and normal free t4,so I'm very glad to be getting sorted I'm so exhausted! I know the tablets will take a while to work tho.endocrinologist mentioned possibility of hashimoto (prob spelled wrong)or something called adlingtons disease? FEeling a bit confused but fingers crossed I'm on the right road now.

cltt97

That's great Dubbo. Hashimoto's is autoimmune thyroiditis and Addison's is when your adrenals have stopped working (chronic adrenal insufficiency). Either has to be tested via blood test(s). hasmimotos via an antibody test and Addingtons usually via a synacthen test/ACTH stim test.
Are you being tested for either?

dubbo

cltt97 wrote: »

That's great Dubbo. Hashimoto's is autoimmune thyroiditis and Addison's is when your adrenals have stopped working (chronic adrenal insufficiency). Either has to be tested via blood test(s). hasmimotos via an antibody test and Addingtons usually via a synacthen test/ACTH stim test.
Are you being tested for either?

Thanks for your helpful reply :)I knew I had the name wrong ! They ran a lot of bloods today to test for both,and I have to go back in 8 weeks where they will adjust my meds and run more tests.they didn't seem very impressed that my Dr had taken me off meds altogether! Great to be getting sorted,just hope the tablets work soon I'm so knackered,this forum has been a great help and support

june12

Do you mind if I join you? I haven't had a chance to read all the posts yet but I was hoping that somebody could recommend a good doctor in Dublin for me. One that is willing to consider targeting a low TSH or at least look beyond the TSH results at the symptoms.

I was diagnosed with Hypothyroidism last year when I was pregnant. I hadn't noticed any symptoms before I got pregnant but when I went on eltroxin my skin, nails and hair looked much better. My face and neck changed and I just generally looked much healthier so I think the pregnancy aggravated rather than caused the condition. I was started on a low dose and gradually ended up on 150mg. After I had my son I felt fine and I was losing weight faster than I had in my previous two pregnancies. Then when I had my final check up at the maternity hospital they suggested that I drop back to 125mg.

I felt ok initially on the new dose but the weight loss dropped off quickly and then over a couple of months the symptoms started to reappear along with some some new ones:- dry skin, brain fog to the point where I couldn't hold down a normal conversation, weight gain even though eating to lose weight, sluggishness like my digestive system had slowed down, neck started swelling again and then I started to get pins and needles in random places for no apparent reason (b12 deficiency?). After a few days where I felt things were going down rapidly I got some blood tests done privately close to work and went back up to 150mg the next day.

I was surprised when the thyroid and b12 results came back in a normal range - TSH: 2.18 (0.35-4.94), Free T4: 16.9 (9-20), B12:309 (211-760) but I read some articles that suggested that doctors should be targeting lower levels if the patient is having symptoms so I continued on the higher dose anyway. That was two weeks ago and I'm feeling much better now - not perfect but much more alert, swelling in my neck is going down and I've got my appetite back and sluggish feeling has gone.

I went back to my GP today and that didn't go well. I got a big lecture - shouldn't be reading stuff off the internet (they were articles written by medical professionals), I have no medical qualifications, my results are normal and there is absolutely no way that she is increasing my prescription, pins & needles are not caused by a b12 deficiency because my results are normal (I've read that they should be a lot higher but there I go with the internet again ). She said that its probably nothing but come back if it persists and she'll oder some neurological tests - does this mean she thinks its more likely to be MS rather than a B12 deficiency???

Anyway sorry for the long post but could anyone recommend a good doctor, ideally in the city centre? Thanks!

frenchmartini

i have an ultrasound on wednesday for suspected nodules on the remaining half of my thyroid.
my right side went the same way and was removed in 1997.
i have neck pain, hoarseness, and my neck feels 'blocked'. can see the lump myself when i look in the mirror.

been watching this thread with interest and all the various journeys and just wish i was being helped. i am presenting as hypo but the levels (damn those whoring levels) are 'normal' but not normal to me, i can tell ye.

I just wish someone would listen to me. feel so bad am thinking of going to London to the specialist thyroid clinic over there.

my life is slowly being destroyed by this undiagnosed problem.

having a bad day, sorry.

any of you guys have nodules and what was the outcome, did you get a hypo diagnosis, see an endo, were listened to.

cltt97

Hi June12, do you have Hashimoto's? Very often people feel much much better at the lower end of the normal TSH range, or even lower, when TSH is suppressed. Very difficult to find a sympathetic ear. My GP is in Walkinstown so not very central really, and I couldn't guarantee if he would go along with your regime, although he has in the past. These days I'm under the care of an endocrinologist. A friend of mine with normal T4 but raised TSH goes to one of the wellwomen clinics in town and is very happy with them, also very difficult to get treatment under those conditions.

And sorry frenchmartini, got no experience with nodules, I would have thought if you only have half a gland they may have started supplementing? obviously not... Do you have Hashimoto's?

frenchmartini

no diagnosis of Hashimotos. never had my antibodies tested, or even T3, Reverse T3, etc and never been offered cos my TSH is coming within the normal range so as far as they are concerned i am fine. but am not fine.

there just isn't a will among doctors to listen to symptoms and i am so fed up now living like this.

maybe if i had the blood tests done and rule in or out antibodies then i could move forward and accept that my thyroid is fine and that my symptoms are something else. without knowing, i can't do that.

:(:(:(:(

chessguy

june12 wrote: »

Do you mind if I join you? I haven't had a chance to read all the posts yet but I was hoping that somebody could recommend a good doctor in Dublin for me. One that is willing to consider targeting a low TSH or at least look beyond the TSH results at the symptoms.

I was diagnosed with Hypothyroidism last year when I was pregnant. I hadn't noticed any symptoms before I got pregnant but when I went on eltroxin my skin, nails and hair looked much better. My face and neck changed and I just generally looked much healthier so I think the pregnancy aggravated rather than caused the condition. I was started on a low dose and gradually ended up on 150mg. After I had my son I felt fine and I was losing weight faster than I had in my previous two pregnancies. Then when I had my final check up at the maternity hospital they suggested that I drop back to 125mg.

I felt ok initially on the new dose but the weight loss dropped off quickly and then over a couple of months the symptoms started to reappear along with some some new ones:- dry skin, brain fog to the point where I couldn't hold down a normal conversation, weight gain even though eating to lose weight, sluggishness like my digestive system had slowed down, neck started swelling again and then I started to get pins and needles in random places for no apparent reason (b12 deficiency?). After a few days where I felt things were going down rapidly I got some blood tests done privately close to work and went back up to 150mg the next day.

I was surprised when the thyroid and b12 results came back in a normal range - TSH: 2.18 (0.35-4.94), Free T4: 16.9 (9-20), B12:309 (211-760) but I read some articles that suggested that doctors should be targeting lower levels if the patient is having symptoms so I continued on the higher dose anyway. That was two weeks ago and I'm feeling much better now - not perfect but much more alert, swelling in my neck is going down and I've got my appetite back and sluggish feeling has gone.

I went back to my GP today and that didn't go well. I got a big lecture - shouldn't be reading stuff off the internet (they were articles written by medical professionals), I have no medical qualifications, my results are normal and there is absolutely no way that she is increasing my prescription, pins & needles are not caused by a b12 deficiency because my results are normal (I've read that they should be a lot higher but there I go with the internet again ). She said that its probably nothing but come back if it persists and she'll oder some neurological tests - does this mean she thinks its more likely to be MS rather than a B12 deficiency???

Anyway sorry for the long post but could anyone recommend a good doctor, ideally in the city centre? Thanks!

@june12 B12 300 range is very low needs to be optimal for people with Endo issues, at least 500 plus... iN Japan under 500 is considered far too low.. see my prev posts , also vit D should be checked it should also be optimal , as when vit B12 is low vit D can well be affected and iron too,

Magnesium citrate or malate is fantastic for pins and needles and muscle issues , , often people with Endo issues do not absorb all the magnesium from foods and are low in Magnesium , Magnesium oxide is no good it is cheap, only good if you have constipation , the ch-elated forms are the best as stated above , they are actually better absorbed,
but of course your doc , know this ..:)

Your doc may well recommend the above for 1 month to see if their is a change run it by them .....

good luck
chessguy

cltt97

Frenchmartini: You are right, that is the next thing you need to do, get a test covering FT4, FT3, TSH and antibodies (TPO Ab). I wouldn't worry too much about reverse T3, firstly because no lab in Ireland that I know of can test it, and it is also highly variable so I'm not sure how much information one actually gets from it. I would also ask for Cortisol, iron status, full blood count, B12, folate, Vitamin D, Lipids, Glucose, Liver function test, kidney function test. Since you only have half a gland left I would also look into Calcium levels. Maybe let us know where you're based and someone could recommend a good GP that will write out these tests for you. Have you ever been referred to an endo?

chessguy

dubbo wrote: »

Hi everyone,I saw my endocrinologist today and was put on a low dose 25mg :)I am classed as subclinical hypothyroid because elevated tsh and normal free t4,so I'm very glad to be getting sorted I'm so exhausted! I know the tablets will take a while to work tho.endocrinologist mentioned possibility of hashimoto (prob spelled wrong)or something called adlingtons disease? FEeling a bit confused but fingers crossed I'm on the right road now.

@dubbo, get your ft3 checked because if Ft4 is in range you need to check if it is converting to ft3 , if it is then maybe you are not absorbing the ft3, (ft3 is what we actually use ft4 is just a suitcase that converts to Ft3..
Bad diet can cause these conversion and absorption issues with too many goitrogenic foods , like hidden soya in Bread, and or a lack of minerals.

Also if you can get an iodine test it may well prove useful,

anyone else had the iodine test done ,, ????
sure would like to know where you got it done..#####

you take a iodine tab and urine is tested the next morning to see if you actually absorb it.



goodluck
chessguy

dubbo

Thanks for that ill ask the consultant when I go back.on levothyroxine 5 days now and feeling worse than ever,sleeping more than ever and very out of it,is this normal ? I'M a total newbie to all this. THanks everyone

cyning

dubbo wrote: »

Thanks for that ill ask the consultant when I go back.on levothyroxine 5 days now and feeling worse than ever,sleeping more than ever and very out of it,is this normal ? I'M a total newbie to all this. THanks everyone

It would be for me: It always takes me a few weeks(2 or 3) of feeling worse when my meds are adjusted before I start feeling better

dubbo

Thanks that's reassuring :)fingers crossed won't be too long:)

frenchmartini

cltt97 wrote: »

Frenchmartini: You are right, that is the next thing you need to do, get a test covering FT4, FT3, TSH and antibodies (TPO Ab). I wouldn't worry too much about reverse T3, firstly because no lab in Ireland that I know of can test it, and it is also highly variable so I'm not sure how much information one actually gets from it. I would also ask for Cortisol, iron status, full blood count, B12, folate, Vitamin D, Lipids, Glucose, Liver function test, kidney function test. Since you only have half a gland left I would also look into Calcium levels. Maybe let us know where you're based and someone could recommend a good GP that will write out these tests for you. Have you ever been referred to an endo?

thanks for that. am in north kildare but in city centre once/twice a week. yes, saw an endo in 1997 when i had the partial thyroidectomy. he did the surgery but never saw him again, cos my levels were always "normal."

i had blood cortisol done 4 weeks ago and it was 281 (11.30am reading.) Cholesterol still high at 6.6 but down from 7.8. Liver function normal, Iron normal, they didn't give me the figures. I remember being really upset when they all came back "normal" cos i know, i really know, that my thyroid is the root of all my issues but they aren't LISTENING to me.
when i asked about antibody tests i was told there was no need cos my TSH was within normal range so 4 weeks ago it was 2.58, lab reference to 4.0 and my T4 was 14.9, lab ref 9.0 to 25.0 as GP said "putting you right in the middle of the range values, no further action needed."

cltt97

That's the problem with thyroid function tests - if you're in the normal range, then everything is fine with you, but in fact, it appears that for many people 2 notches up or down depending on the analyte (even within the normal range) can make a huge difference. So even although your TSH is 2.58, maybe you'd feel much better if it was closer to 0.4 and your T4 more around 19, but it's very hard to argue that case. Do you have pre operation readings from 1997?
The cortisol reading is hard to interpret. Best to have that done at around 8am. thing is, this is highest in the morning and slowly decreases towards the evening - the only reference range they have is for 8am. There are saliva tests that take readings 4 times a day, but these have to be ordered from abroad. bit messy, but doable, there is also a doc in D14 that will organise this.
In any case, you should try and get a copy of all blood tests you have ever had done. Things might always be in the "normal range" but it's very handy to track any changes. Like my cholesterol and kidney filtration rate are hugely influenced by where my thyroid levels are. And my ferritin and B12 are in the "normal range" but at the lower end and that's not really ideal. You have to start taking total control of your situation, gather all your data and move to another doc if the one treating you is ignorant. It's a painful journey, but there is no alternative if you want to get better.

frenchmartini

cltt97 wrote: »

That's the problem with thyroid function tests - if you're in the normal range, then everything is fine with you, but in fact, it appears that for many people 2 notches up or down depending on the analyte (even within the normal range) can make a huge difference. So even although your TSH is 2.58, maybe you'd feel much better if it was closer to 0.4 and your T4 more around 19, but it's very hard to argue that case. Do you have pre operation readings from 1997?
The cortisol reading is hard to interpret. Best to have that done at around 8am. thing is, this is highest in the morning and slowly decreases towards the evening - the only reference range they have is for 8am. There are saliva tests that take readings 4 times a day, but these have to be ordered from abroad. bit messy, but doable, there is also a doc in D14 that will organise this.
In any case, you should try and get a copy of all blood tests you have ever had done. Things might always be in the "normal range" but it's very handy to track any changes. Like my cholesterol and kidney filtration rate are hugely influenced by where my thyroid levels are. And my ferritin and B12 are in the "normal range" but at the lower end and that's not really ideal. You have to start taking total control of your situation, gather all your data and move to another doc if the one treating you is ignorant. It's a painful journey, but there is no alternative if you want to get better.

i know that now. i've been feeling ill for five years. i just assumed the medical world would have worked it out by now.
you've been a great help to me, many thanks.