advise on what I should do about symptoms? - Thyroid UK

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advise on what I should do about symptoms?

Jump1 profile image
39 Replies

symptoms - cold hands/feet, low body temp. massive hairloss and thinning everywhere no growth, periods 2 days barely 3. constipation. swelling in fingers and feet/ankles intermittent, face looks swollen.

my results history are:

feb 2018:

TSH 2.506 (0.3 - 4-5 same for all tsh results) FT4 13.5 (9-19)

Throgloubin 26. 71 peroxidase 52.38

Nov 2017

TSH: 2.77, peroxidase antibodies 91

Sept 2017

TSH 3.32

FT4 16.6 (12-22)

FT3 4.69 (3.1 - 6.8)

Throglouibn 19.400

peroxidase 43.6

May 2017

TSH 2.13 FT4 16.3 (12-22)

Jan 2017

TSH 2.07

FT4 15.6 (12-22)

Octoberr 2016

TSH 5.24

FT4 14.9 (12-22)

June 2016

TSH 3.18

FT4 19.4 (12-22)

Any advise? should I take T3, I got a t3 prescription from a private dr based on nov 17 results. but no other gp I have seen or endo says I have anything wrong or should take anything.

hair loss is killing me

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39 Replies
Jump1 profile image
Jump1

oops sorry always forget....

Karen154 profile image
Karen154

Hi, my reply probably isn't much help to you. But im suffering from the same symptoms. Very light periods and heavy hair loss. Except my hands burn scorching hot. I can't bear it. Like yourself I'm struggling to find an answer to it.

How did you feel when your TSH 5.24.

It could be that your being over treated.

My symptoms started when my TSH dropped below 5.00.

Can anyone advise on symptoms of over treatment for this lady?

If periods were heavy it would likely be under treatment.

in reply to Karen154

Thyroid treatment is a complex business. I think itwouldbegood if youdid a separate post with your blood results. Sometimes people can feel worse as treatment progresses if your medication has not been increased soon enough.Thereis no way you are over treated with TSHof 5 and in a lot of countrys a tsh of 3 would be the start pointof treatment. There are lots of reasons why you might feel worse but it is not due to over treatment.

Karen154 profile image
Karen154 in reply to

Oh I didn't mean advise me about my symptoms.

I meant could anyone advise about symptoms of over treatment. I think she may be over treated.

Thanks

Jump1 profile image
Jump1 in reply to Karen154

Hi karen i am not on any treatment

Dee8686 profile image
Dee8686 in reply to Karen154

Her tsh is too high to be overtreated! She’s undermedicated with a tsh that high

Karen154 profile image
Karen154 in reply to Dee8686

Hi my GP told me that the TSH is from 1 to 10 with 1 being low and 10 being high. So if TSH is 2.00 and under its low.

Jump1 profile image
Jump1 in reply to Karen154

Ive read that it should be 1. That anything above 2.5 is a risk for hypo.

SeasideSusie profile image
SeasideSusieRemembering in reply to Karen154

Karen

Either your GP doesn't understand thyroid results or you have misunderstood.

A typical range for TSH is about 0.2-4.2 and anything over 4.2 (or the upper limit of the lab's particular range) means hypothyroidism although it is rarely treated by doctors in the UK until it reaches 10.

A treated hypo patient generally feels best when TSH is 1 or below.

in reply to Karen154

Overtreatment usually causes palpitations, shakyness, diarreah, unable to sleep but these symptoms can also becaused by undertreament.

Jump1 profile image
Jump1 in reply to

No i have nonr of them. I dont care about all the other symptoms i can deal with them. I cannot deal with the hair loss

Karen154 profile image
Karen154 in reply to

Well my TSH dropped from over 5.00 to below 0.05. Dr said it was abnormal to be so low.

My eyebrows have gone and eyelashes are shedding.

Scalp isn't good and body hair has stopped.

Periods are a day and very fatigued.

I think blood tests should only be a guide and treatment should be suited to the person nor just the bloods.

Jump1 profile image
Jump1 in reply to

My tsh was 5 over a year ago in oct 2016 .its been around 2 to 3 this past few testing

Dee8686 profile image
Dee8686 in reply to Jump1

My tsh is similar and I’m having symptoms including very light and non existent periods among fatigue and other things.

Jump1 profile image
Jump1 in reply to Dee8686

What bout ur hair? It has been devastatin lost more than half everywher and the strands are like spider webs. Worst symptom of all. No growth. What are your thyroid results? Are you on any meds?

Karen154 profile image
Karen154 in reply to Jump1

Try regaine 2% for your scalp. It will reduce the hair loss also a tinted hair spray may help you.

Xxx

P.S I've been to 2 NHS thyroid consultants and I've been told the lower the TSH means over treatment or over active. I won't reply again on the post as I don't want to be dragged into an argument. When I have an improvement with my hair I'll let you know what works best.

Jump1 profile image
Jump1 in reply to Karen154

hi Karen, tried it, didn't work. thanks for the feedback, no problem, I am sure no one meant to argue with you. sometimes people don't realise what they type and how it is interpreted. keep me informed on your hair. I am really interested in it. as it has devastated me, good luck

Karen154 profile image
Karen154 in reply to Jump1

Keep your chin up. The Dr told me hair will grow back when the thyroid is correctly medicated. But it us hard to find the right balance. Let me know how your getting on. Xx

Jump1 profile image
Jump1 in reply to Karen154

will do Karen, its very hard to keep chin up wihen dr don't acknowledge there is a problem and wont medicate. my loss has been going on for 2 years do not know how much longer I can cope with it. will keep in touch best of luck to you! x

Karen154 profile image
Karen154 in reply to Jump1

Can you change DR's? It is very distressing. Xx

Jump1 profile image
Jump1 in reply to Karen154

I have been to 3 in the one surgery when they aren't available they all say the same. plus I have a family member a GP and they have said the same thing. nothing wrong. I hate drs. they should all get thryroid problems and face abnormal hairloss. there is nothing more I can do but monitor my bloods.

Karen154 profile image
Karen154 in reply to Jump1

I have hate them as well as they all stick together. But I have found one that's helped so don't give up.

Ask to be referred to a dermatologist. If it isn't the thyroid then you need to know what it is and as they can't tell you what the problem is then you need the referral.

If there are no other causes a dermatologist may well do an internal referral to a thyroid consultant.

Under and over active thyroid as well as all thyroid medications can cause hair loss so you do need to be careful.

My hair started to thin when I started taking levothyroxine. But it really increased and became noticeable when my TSH dropped to under 5.00. Has this been the case with you.

Have you asked your GP why your TSH level has dropped when your not taking medication.

Who prescribed the T3 for you and what advise did he/she give?

Xxx

Jump1 profile image
Jump1 in reply to Karen154

Ive been to 3 derms all said that i had telogen. Said thyroid was fine they only ever had tsh and ft4 results

I have also seen an endo privately with my september 2017 results. He said iodine was my problem never menioned anyhing about my hashi. Said hairloss was due to stress not it. Stress was gone 2 years precious. Another endo emailed me back said he didnt think thyroid was my cause of hairloss and said wud only treat if above 5 tsh with high antibodies. Said didnt give t3 either. Thats what made me think t3 must help with hair growth why would he have said that. Thats partly qhy i asked the private gp for t3 if he though was useful. I have collecyed 2 months prescrip of it to have but i havent taken any of it.

No gp just said tsh changes.

A private gp i wemt to see he has been only one to say i am heading towards hashimotos. I asked if i could have t3 if he thought it was useful.

My hair shedding has been consistently bad since jan 2016. It has never changed no matter the tsh level

Jump1 profile image
Jump1

Hi i am on no treatment. When i was 5 i cannot remember other than the devastating hairloss i couldnt tell. I was still having all the other symptoms too. No change really. I am broken with this hair.loss. i have a t3 prescription but not.touched it. Dont know what to do

in reply to Jump1

I would defo get going on T3 prescription you are clearly hypothyroid and will continue to be ill unless you take some thyroid replacement. There is a lot of debate about the validity of blood tests with a growing number of people treating based on symptoms rather than lab result. I became very illlast time I stopped my thyroid hormones but my lab results havealways been more normal than yours. I am much better on a bit of T3

Jump1 profile image
Jump1 in reply to

R u on t3 only?

Karen154 profile image
Karen154

Hi, you may want to check this guy out on U tube. Type in Dr Haymeyer. He's uploaded some good videos on thyroid. I'm considering trying to contact the clinic.

If your not taking medication it could be that thyroid is starting to turn over active.

I've definitely been over treated and symptoms are almost the same as yours apart from my burning hands.

No I take a small amount of NDT and 25mcg of T3. It is rather unusual misture and not One I would encourage others to take nessasariliy. Ideally you should bestarted on Levo to see if it suits you and if not try combination of levo andT3 however there are quite a few people who take just T3 and do well but it can be a bitup anddown with thyroid levelsand some need to take 3 times a day which isa fuss. One thing about getting the meds right for thyroid is that it cannot be hurried so you need to start on a very low dose and work up over several weeks. Have a look for some T3 only posts to get better info.

Jump1 profile image
Jump1

Well there is no chance i will get the levo. My drs and endo say i am fine. No thyroid problems.

SeasideSusie profile image
SeasideSusieRemembering

Jump1

What is the range for the antibodies?

Have you had vitamins and minerals tested - Vit D, B12, Folate and Ferritin? If so post results with ranges and say if you are supplementing.

Jump1 profile image
Jump1 in reply to SeasideSusie

All my vitamin and minerals are high above the levels e.g. 70 and 699 for b12 no issue there. Folate very high as aell was takin floradix for long time. My antibodies are positive for hashimotos. Less than 34 for peroxodase. 20 for thyrogloubin. Though the results this month both say anyhing more than 2 is positive.

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Jump1

So the Hashi's is gradually going to destroy your thyroid and it would be prudent to start Levo now but the problem is finding a doctor to do just that.

Are you addressing the Hashi's by being strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily to help reduce the antibodies?

" I got a t3 prescription from a private dr based on nov 17 results.

Nov 2017

TSH: 2.77, peroxidase antibodies 91"

That's very surprising. I don't understand how any doctor can prescribe T3 without testing FT3 and FT4. A prescription for Levo would have made a lot more sense but again the free Ts should have been tested.

Jump1 profile image
Jump1 in reply to SeasideSusie

he did test the ft3 and ft4 I cant recall what levels he told me, but they were pretty much the same as the rest, middle of the range.

I asked for t3 if he thought would be beneficial.

I have seen 4 other drs and endo and all said there is not any problem with my thyroid. no chance me getting any levo. I will be bald before I get anything.

my diet has always been pretty much gluten free. my peroxidase have decreased from 91 in the past 3 months I am wondering if this is anything to do with my stomach healing from gastriis and h pylori (treated in September) but not sure why my thryrogloubin has increased by 6 in the past 3 months.

SeasideSusie profile image
SeasideSusieRemembering in reply to Jump1

Antibodies will fluctuate so not really that surprising that your TG antibodies have increased.

SlowDragon is our resident gut guru and I'm sure she will be along with some wise words, including gluten free needs to be 100%.

As for hair loss, check out this article healdove.com/disease-illnes...

Jump1 profile image
Jump1 in reply to SeasideSusie

thanks, it pretty much is, I don't eat gluten. I had h pylori, got treated in September. Hospital said likely gastritis too, never got endoscopy. I do wonder if it has decreased my peroxidase because of this, though it increased before it decreased. was 40is when first diagnosed, then 2 months later went to 90s then 3 months later went to 50. but wonder what causes the thyrogloubin to increase?

Hair loss I have been over everything 100 times and more, all my vitamins are excellent, in fact only I never went to dr before I would say all my vitamins are 100 times better than they have every been, iron ferritn vitamin d everything. I don't dye my hair or apply any product on it. there is no hereditary hair loss in family. derms have all confirmed the telogen diagnosis.

hormones estrogen etc all check and fine no problem there. birth control never been on it never been on any medication at all ever, hardly even a pain killer.

stress has all gone no where near the high levels of stress I had when this all started that would continue it or cause it. taking no meds

it just will not stop falling...and the finess of all the hair now like a spiders web.

thanks for the feedback seaside suisie I appreciate it. I just don't know whether I should take the T3 I have got or wait, because no one seems to think my results are overly bad. even though I have hashimotos. Derms said that the antibodies do not cause the hair loss and that my thyrdod results aren't bad enough to cause it.

Yes I had the same for 30 years of ill health.Drs cannot be relied upon re thyroid issues. Have a read around the posts.If you dontfeel confident with the T3 you could get some NDT. I takesomething called thyrogold. It is notconsiderred a medicine but a supplement. There is another supplement sold in uK called metavive which would be easyier to get.They both contain thyroid hormones and work well for some people.Keep the T3 in reserve. It is very much a trial and error process to get to take the right meds.

Jump1 profile image
Jump1 in reply to

I just really don't have a clue. do you need a prescription to get those?

No you can just google Metavive much cheaper and easyier to get. No prescription needed as not considered a drug. IT is being recommended a lot by a Dr peatfeild who is well known to this forum. Hehas written abook about thyroidcare that might help you but Ihave forgoten name of it. Metavive is not regulated as a drug and so its consistancy is not garenteed. But is is aconsistant amount of dried thyroid extract so not going to be way off and Idont think the thyroid gland produces a consistant dose of hormone itself.

Thyrogold isAmerican and was develpoped by anow deceased DrLowe. It issoldby his wife. I just goggle thyrogold when I want to buy some.

Jump1 profile image
Jump1

I briefly read about the two of them. The thyrogold looks the more reliable. I dont understand though does it contain t3 and t3? Why is it diff than the meds the drs give and u need a prescription for?

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