Three months after being diagnosed with under a... - Thyroid UK

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Three months after being diagnosed with under active Thyroid..advice please

Hather profile image
20 Replies

Advice please, I am going to dr on Wednesday 5th October 2016.

About three months ago I was found to have borderline under active thyroid, given levethyroxine low dose of 25.. and vitAmin D was borderline..after 6 weeks blood test apparently was normal and the dosage stayed at 25.. I am 81 year o,d lady, I had not known anything about askin

for a print out..if now blood test shows normal, should I ask to come off,them or ask for print out maybe.

I get out every day can walk up hills no problem..My arms are a bit tender, I feel chilled sometimes and have chronic constipation and nausea and feel there is phlem in my throats and often can't finish meal, though I like veg and fruit..I fall into deep sleeps in the afternoon and evmening but sleep through the night.

MY weight is stable at just under 9 stone.. I do ha e multiple gall stones but only occasionally get attacks,so not having an op for now..I have reoccurrence of prolapsed bowel which may need an op which I want to avoid if poss.

I rarely go,to a dr And have made two appointments a week apart, as I am not sure if,these things are separate concerns just in case she will only discuss one thing

Thanks for reading, any advice would be welcome .. dr has said I am not a hyperchondriac, but I think I am in denial a lot of,the time which is a fault in some way

HAther XX

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Hather
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Clutter profile image
Clutter

Hather,

The normal range is very broad so it is a good idea to obtain a print out of your results and ranges so you can be sure you are optimally dosed.

The goal of Levothyroxine is to restore the patient to euthyroid status but having achieved this you must continue taking Levothyroxine for the rest of your life otherwise thyroid levels will drop and you will become hypothyroid again.

As you aren't eating well you may be malnourished and suffer from vitamin and mineral deficiencies. Ask your GP to test ferritin, vitamin D, B12 and folate. VitD and B12 are frequently very low in patients >70.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Hather profile image
Hather in reply toClutter

Thank you Clutter, except for borderline D the others are ok but I'll ask for a print out and see if she will agree..😊

Clutter profile image
Clutter in reply toHather

Hather,

OK doesn't necessarily cut it. Optimal is the goal. It's easy enough to optimise low or borderline results and supplements aren't expensive.

Hather profile image
Hather in reply toClutter

Hi I have been back to dr..she gave these two nos TSH 3.94 (0.35-5.5)

T4 13.9 (9.0-22.7).. she said that's all she has to go on as only recently diagnosed..ha e to go for another blood test I. February, which is six months after last one. THe. Vit D she will check after bone scan when I get it..she said my hormones were normal..I ha e a further appt,net next week when I want to talk about not being able to eat a full meal and slow evacuation..not not sure that's related to thyroid..she is a very nice doctor ..I've been goi g to her for years .

Thanks for reading 😊

HAther

shaws profile image
shawsAdministrator in reply toHather

I had nausea as a symptoms before being diagnosed. 25mcg is usually an incremental dose and 50mcg a starting one. I assume she's given you a low dose due to your age.

To ask you to go back in February is quite a long time as usually a test at 6 to 8 weeks is usual.

If you feel worse and also have more symptoms, make your appointment earlier than February. a low dose can rebound on us and our body needs the active hormone T3. Levo is a synthetic T4 and has to convert to sufficient T3 which is required in all our receptor cells but 25mcg I doubt will provide much T3.

The aim of thyroid hormone replacements is to reduce our TSH to 1 or lower and to feel well.

Hather profile image
Hather in reply toshaws

Thanks ..The February one will be third one .. I take levothyroxine about 5 am the. Omeprazole before lunch, I was on domperidon ,prescribed by consultant-for two years

for nausea, but that apparently has proved unsafe for older people I. 2014 report....I do find all the figures very confusing indeed,but feel well so that's good so far,. I appreciate your input cos it seems quite complicated to me

HAther 😊

shaws profile image
shawsAdministrator in reply toHather

When you have the test don't take your levo at 5 a.m. take it after the blood test which should be the very earliest possible and fasting.

When hypo we can get stomach problems because everything in our body slows down and we have low acid rather than high and the symptoms are also very similar so the GP gives us acid-reducing tablets like Omeprazole and you may not have high acid. Don't stop Omeprazole before reading things to make sure you don't have high acid.

If we have high acid, taking Betaine plus pepsin tablets with food, particularly protein as it will help dissolve it. Or you can take Apple Cider Vinegar mixed with water/juice during meals. This is an excerpt from the next link:-

Healing the gut is a huge topic that can’t be covered adequately in a few short sentences. But I will say this: the first step is always to figure out what’s causing the gut dysfunction. As we’ve reviewed in this article, low thyroid is one possible cause, but often hypochlorhydria, infections, dysbiosis, food intolerances (especially gluten), stress and other factors play an even more significant role. The second step is to address these factors and remove any potential triggers. The third step is to restore the integrity of the gut barrier. My preferred approach for this last step is the GAPS diet.

chriskresser.com/the-thyroi...

Hather profile image
Hather in reply toshaws

Yes I wouldn't take thyroxine till after, but thanks for reminding me..the gut situation is complicated I know.. I loads of veg and some fruit every day , I saw the pharmacist for a private chat, I know the gut is complicated. I have an op two years ago for prolapsed bowel and this problem is reoccurring

And when my grandchildren want to take me out for a meal I panic as I can't eat too much..but they understand , It is a problem.. but see what dr says next week..the day of an outing I spend all day trying to evacuate, I drink loads of water warm drinks, still a problem and then I mat take a couple of kaolin tablets..ridiculous I know and a dyoralite drink, just to replace salts from all this effort..the pharmacist said that's ok so long as it's just very rarely..

And to think I was not sympathetic when I was young when my lovely mother in law used to go on and on about her senekot for her problems..

I will up what you suggested thank you

shaws profile image
shawsAdministrator in reply toHather

When we're young we have no idea what it is to feel unwell, so it's good we are unaware until we actually develop a health issue :)

RoboTh profile image
RoboTh in reply toHather

I started on domperidone for nausea and slow evacuation by gastroenterologist. I'm 44. I think it's definitely linked to hypothyroidism. Ive been getting treatment for lots of different symptoms of hypo yet no one put it all together and said let's treat you for the actual cause /hypo! After years of surveillance and TSH between 5-10 and antibodies 1300 I've finally started levothyroxine (tsh 11.4) nausea constipation gone, not as cold not as tired. Moving more etc etc. Just need a dose increase now good luck

Clutter profile image
Clutter in reply toHather

Hather,

I think you are under medicated now and there's no point in continuing to be under medicated until February. Most people on Levothroxine need TSH around 1.0 with FT4 in the upper quadrant to feel well. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk for a copy of the Pulse article to show your GP when you request a dose increase.

Hather profile image
Hather in reply toClutter

Thank you Clutter, I will email her..I,will,check,if,dr meant 6 weeks, Will ,

Do some more reading and try and understand a bit more..I think by law you can ask Drs for written details.. Everyone is very helpful, it's a lot to take in ..so many nos to keep a note of

HAther 😊

shaws profile image
shawsAdministrator in reply toHather

It's too much to take in initially but we gradually understand what we have to do to improve.

shaws profile image
shawsAdministrator

Welcome to our forum and am sorry you've been diagnosed.

When you make an appointment for a blood test it should be the earliest possible and fasting. You can drink water. If you are taking levothyroxine you should allow 24 hours gap between your last dose of levo and the test and take it afterwards.

You take levothyroxine first thing when you get up with a full glass of water and wait for about an hour before eating.

I am glad you are in reasonable good health for your age and always get a print-out from the doctors with the ranges quoted (these are figures in brackets) and post for comments. Ask GP to test B12, Vit D, iron, ferritin and folate as we can be deficient.

Regards

Hather profile image
Hather in reply toshaws

Thank you will ask next week, she may have done all that the first time

shaws profile image
shawsAdministrator in reply toHather

Always get a print-out of your tests for your own records and you can post them if you have a query. Make sure the ranges (figures in brackets) are also stated.

Hather profile image
Hather

She said there was not enough to print out..what do the nos I quoted mean please

TSH 3.94 (0.35-5.5)

T4 13.9 (9.0-22.7)

I think she said that was low but it can change over a year or so?? Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply toHather

Hather Your TSH is 3.94 in a range of 0.35-5.5. Your GP will be happy because it is within the range, however it is not optimal as it's rather high in the range. Most people feel better when TSH is around 1.

Your FT4 is 13.9 in a range of 9-22.7. Again it's within range so your GP is happy but it is low. Most people feel best when FT4 is in the upper third of the range which is 18.1 or above.

As Shaw's has said, it's normal to retest 6-8 weeks after starting Levo or a dose change, leaving your test until February is too long.

Ensure you follow Shaw's advice about fasting and leaving Levo off for 24 hours before your thyroid tests and book the first appointment of the day.

humanbean profile image
humanbean in reply toHather

A TSH of 3.94 is in the reference range, but for someone who has been diagnosed as hypothyroid and is on meds the result is much too high. Most people feel best with a level of 1 or under, but it is personal to each individual, and some people feel best with it between 1 and 2.

You are under-medicated. Taking more medication would lower your TSH (which is what you want to happen).

Your T4 level (I'm guessing it is Free T4 rather than Total T4) is too low as well. Taking more medication would raise your Free T4 (which is what you want to happen). In fact your level is only just over a third of the way through the reference range at the moment. You would probably feel better if it was two-thirds of the way through the reference range or maybe even a little higher.

Levothyroxine is usually raised every 6 weeks by 25mcg at a time.

So, take 25mcg for 6 - 8 weeks then test. If results show under-medication then increase dose by 25mcg per day.

Then take the higher dose for 6 - 8 weeks then test again and raise again if still under-medicated. Keep on doing this until symptoms go away and you feel well, but you do need to watch out for over-medication symptoms, because it can sometimes be easy to miss your perfect dose.

One of the problems you are going to face is that doctors treat thyroid meds as though they were dynamite and just as dangerous. And the older people are the more dangerous doctors think thyroid meds are. So you are going to have to fight for more meds if you want to feel well.

Your doctor can't refuse to give you copies of your blood tests. You are entitled to copies under the Data Protection Act 1998. Ask the receptionists to print out your blood test results, including reference ranges, for the last couple of years. Expect to be charged a small sum for paper and ink. Don't be surprised if the receptionists say they have to get the doctor's permission, this would be normal practice. Tell them you will be back the next day to collect your results. You should probably take some form of identity with you.

Let us know how you get on.

Hather profile image
Hather in reply tohumanbean

Thanks human bean..I was diagnosed in June on Annual check up..then second blood test in September.. I will check next week if she meant six months or six weeks, as I don't feel unwell apart from long standing digestion and slow evacuation problems, deep short sleeps sometimes and tender arms, I feel fine..ver difficult to insist with a very kind doctor when I'm only beginning to understand all about this. She knows me quite well, tho I don't go often...

I have got my blood pressure down from 153/90 to Average 120/ 80 pulse 83 by doing a lot walking most days. Having had lot of stress ..looking after hubby who died last year..but I am lucky as I have a flat in a retirement block, so don't get too lonely and don't take my health for grante

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