Hypothyroidism - Newly diagnosed.: I was... - Thyroid UK

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Hypothyroidism - Newly diagnosed.

ib1703 profile image
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I was diagnosed with under-active thyroid nearly 6 weeks ago. I'm new to all of this. I'm male and 60 years old. I am taking 100mcg of Levothyroxine. Next blood test - the first since taking medication is next week. My TSH was 8.48 and free T4 was 10. That's all that's mentioned on results last time relating to Thyroid. I don't know what to make of the reading and whether anyone has a view on whether dose may change. Some symptoms have disappeared/diminished but others like swelling of ankles come and go and still feel tired. I have only been dealing with GP and have thought about referral to an Endocrinologist. Is that a good thing to do? I would be good to hear from anyone either just starting out or a bit further down the road to share experiences.

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shaws profile image
shawsAdministrator

Welcome to our forum.

It's very early days yet for you and your GP should increase your dose until you feel much better. She should not stop your dose due to the TSH level alone.

It can be a while before you feel well with symptoms gone. Always get a print-out with the ranges for your own records and so you can post if you have a query.

Ask for your B12, Vit D, iron, feritin and folate to be tested next time.

The blood test should be as early as possible, fasting but you can drink water and allow about 24 hours from your last dose of levothyroxine and your blood test. Take levo afterwards. The reason for this is that many doctors only take account of the TSH and not the clinical symptoms so may not increase levo due only to the TSH level. That's not the correct thing to do. We should aim for a TSH of 1 or lower or suppressed whichever makes us feel better. It's a pity GPs are unaware of this as they expect suppressed to cause other problems.

Your dose will be increased by 25mcg levothyroxine around every six weeks until your TSH is acceptable to them, not you who may still be having symptoms. It's a learning curve but members are helpful.

Usually GPs deal with tackling the thyroid gland dysfunctions and only need to see an Endo if something crops up. Members have also found that some Endos are dismissive of symptoms but there are a few good ones.

It takes months to become hypothyroid so it will take a time to increase your dose gradually until you feel good and symptoms go. That's the aim.

kathy1029 profile image
kathy1029 in reply toshaws

i agree in regards to endocrinologists, you wait to finally see one and are totally disappointed when you leave. that doesnt mean ALL endo's are the same, but most will not prescribe T3, its almost unheard of.

Hello ib,

Welcome to our forum and sorry to hear of your thyroid troubles.

Levothyroxine takes up to 6 weeks to initially saturate the body which will only tolerate small increases at any one time. Your doctor should retest your thyroid hormone levels after 6 weeks and adjust the dose according to results.

Leave 24 hours between last dose and blood draw and try to have the blood drawn early in the morning when TSH is highest.

It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

The goal of Levothyroxine is to restore the patient to euthyroid status and for most people that means TSH just above or below 1.0. but symptoms can lag behind good biochemistry by 6-8 weeks.

People with thyroid issues often have vitamin deficiencies and it is recommended that you have tests for B12, vit D, folate and ferritin as optimum levels are required to ensure thyroid meds are absorbed. There is link below explaining importance of supplementing.

Don't try dieting to lose weight, it won't work while your TSH is high.

The main dietary advice is to avoid all forms of unfermented soy which are considered bad for the thyroid. Otherwise make sure there is fat, carb and protein in your diet to provide essential nutrients.

Post your next set of results complete with ranges (numbers in brackets) for members to comment.

A good read is "Your Thyroid and How To keep It Healthy" by Dr Barry Durrant Peatfield. This will enable you to understand hormone testing results, procedures, progression of illness and ways to manage it.

I hope you are starting to feel a bit better now ib,

Flower

link explaining sups

thyroiduk.org.uk/tuk/treatm...

Link explaining hypothyroidism

thyroiduk.org.uk/tuk/about_...

ib1703 profile image
ib1703 in reply to

Thank you for your response.

Medication instructions state 30 minutes before food and haven’t seen any mention of 1 hour. In fact seen comments about pill absorption on an empty stomach and its much faster than 30 minutes. I usually have Alpen and milk about 45 mins/1 hour after. Does that mean milk is not good for 4 hours?

I am not on a diet but I am calorie counting. Just having 3 meals a day and cutting the rubbish in-between. Stopped drinking tea/coffee and eating drinking rubbish in between meals – just water or fruit. Since starting the medication I have gone from 16st 2lbs down to 14st 12lbs – 18lbs (I’m 6ft tall). 11lbs in around the first 2 weeks. Some will have been the fluid retention. I’m not calorie counting because of Thyroid issue but the health scare made me think. I also guess with the drug the body is playing catch-up a bit as it sorts itself out.

in reply toib1703

Hello ib,

The timings I recommended are the timings I prefer and what used to be recommended on the TUK info page. However, this was updated on 31/3/15 so I guess it is individual choice what timings you choose.

Pill absorption is much faster and complete on an empty stomach. Milk on your Alpen would be fine after 1 hour.

Well done on the weight loss...it seems a long journey but when optimally medicated it just seemed to happen for me.

It took my body several months after the initial dose to finally settle and lose symptoms.

Flower

ib1703 profile image
ib1703 in reply to

Just had my results back from the first blood test after being on medication for 6 weeks. Followed the advice and didn't take the morning medication and had blood test beforehand. TSH is now down to 0.31 from 8.48 six weeks ago (and not on medication then). Range is 0.27 - 4.2. So this is great news for me but I still suffer from swelling feet and really tired. Doctor is now advising diabetes checked out and need another blood test! Any views/experience greatly received.

in reply toib1703

Hello ib,

Great news ... its all working.

There could still be room for improvement though.. can you post the T4 (&T3..?) results complete with ranges? Did your doctor give you an increase?

Tiredness and swelling feet could still be hypothyroid systems as even if optimally medicated ....... it can takes months to address all symptoms.

Sugar issues are big with hypothyroidism. Chronic HYPERglycemia (high sugar) is caused by eating too many carbohydrates and it is imperative not to allow insulin spikes which turns into insulin resistance and then diabetes.

However HYPOglycemia (low sugar) is equally destructive as it forces the already compremised adrenal glands to secrete cortisol. Cortisol tells the liver to produce more glucose to bring sugar levels up. Low used up cortisol levels can disrupt thyroid function and low thyroid hormones can also predispose to higher cholesterol as well as glucose and insulin..... confused...?

A healthy balanced diet should sort everything....I always eat my fruit with protein to avoid that sugar spike.

i.e. grapes & cheese, peach & natural yogurt, apple & nuts, etc.

Flower

Link details thyroid conditions and diabetes chriskresser.com/thyroid-bl...

Link detailing evidencing high insulin

ncbi.nlm.nih.gov/pubmed/205...

ib1703 profile image
ib1703 in reply to

Hi,

After the conversation with the doctor on the phone I went to pick up the results and the next blood test form. The doctor had a further review and I am now having Vitamin B12/folate profile, Haemoglobin A1c, Glucose: random, Full blood count and liver profile tests. Not sure what all of these will prove yet. Looks like my ALT level (liver function test) is also raised. It’s 58 and should be between 0 and 55 iu/L. Previous test six weeks ago it was 73.

They didn’t do T4 or T3 this time. Doctor said they only do TSH in subsequent tests. At the first test my T4 was 10pmol/L (12-22 range). They didn’t perform T3 on first test.

No increase in medication as doctor said it was normal (0.31) and certainly close to the bottom of the range (0.27-4.20). I am still on 100mcg of Levo. Interested in your comment on room for improvement and how I might achieve that given the results and range? Is the smallest dose 25mcg so wouldn’t 125mcg push me the other way?

“It can takes months to address all symptoms” how come?

I have started making sure yoghurt and fruit etc.

in reply toib1703

ib,

Great you are getting all these tests.. . ..they usually leave us until we are REALLY ill..! ! !

I have had previous raised liver enzymes. T4 to T3 conversion occurs mainly in the liver so any thyroid imbalance eventually has a knock on effect.Link below detailing scientific bit.

qjmed.oxfordjournals.org/co...

Re suggested dose increase.....many members function best with TSH of about 1.0 or under. You are within range but many including myself function better slightly under range. Unfortunately without the T4 & possibly the T3 result it is difficult to comment further.

You may find symptoms are alleviated over the next few weeks//months.... I was undiagnosed for a long long time and medicated straight away on 100mcg Levo...it took me about a year for my body to accept this dose of previously missing T4.

A small increase may be achieved by dosing on the extra 25mcg Levo on alternative days. As Levo has a long half life, any benefits felt from a dose increase take a few days so as long as the weeks total amount is correct, it is ok to take doses that have small varying amounts daily.

We are all different ib and I hope you will be fine and it is still very early days.

The following link gives details of private testing of T4 & T3 you might wish to consider should you remain symptomatic.

thyroiduk.org.uk/tuk/testin...

If you post any other test results complete with ranges (numbers in brackets) when you receive them . . members will comment. Don't be fobbed off with a doctors "normal" as members have found the optimal level to be different to that of a doctors "normal".

Optimal levels of vits & iron are vital for thyroid hormone synthesis as explained in link below.

thyroiduk.org.uk/tuk/treatm...

Flower

ib1703 profile image
ib1703 in reply to

If my TSH is now 0.31 and the range on my results is 0.27-4.20 what arguments/points can I use to get my doctor to re-run T4 (was 10 (range 12-22) and T3 tests and increase my medication? I have never had T3 tested. Although when you read what TSH does "TSH causes the thyroid gland to make two hormones: triiodothyronine (T3) and thyroxine (T4). T3 and T4 help control your body's metabolism." Seems obvious that you need to know T4 and T3 as well - just because TSH is OK doesn't mean T4 and T3 are OK. Correct? I hadve read T3 is more for hyper rather than hypo. Help?

ib1703 profile image
ib1703 in reply toib1703

...also what does the range number in brackets indicate. I have seen on posts that it can vary and yet I thought the numbers were the normal range.

in reply toib1703

The range indicates the supposed "best " area of patients to be but ranges vary from area to area.

Many members have found a TSH of 1.0 or below, together with a T4 & T3 in upper quadrant of range to be the best area for them to function.

As shaw said above ...[.. your GP should not dose on TSH result alone..}..

However, I would not worry about your T4 or T3 levels at this stage as you have only just started. As advised hormones can take a while to settle and even when biochemistry is good, you can still be symptomatic for a while.

For a complete overall picture of what is happening ALL thyroid hormones need to be tested. Doctors don't do this as most aren't allowed to test T3 and T4 is nt tested down to cost.

I only gave the private testing advice for future reference and am sorry if I have mislead you ib.

A good read is "Your Thyroid and How To Keep It Healthy" by Dr Barry Durrant Peatfield. This is my bible and not too difficult to understand.

Flower

ib1703 profile image
ib1703 in reply to

Appreciate the response and understand the private side. I'm pushing NHS until I have to go private if needed. I'm insisting on T4 and T3 and agree (having read further) that you can't judge TSH in isolation. I know it's only 6 weeks since diagnosis but I can't let time drag on. I'm pushing for increase in dose as well. It also seems that range is age dependent as well. Just picked up the printout of the results and TSH 0-60 years is 0.1-2 and 0.27-4.2 for >60....how very ageist! Although I am now within range whatever the age (I'm 60), and as you said, there's room for improvement and it may finally assist with the remainder of the symptoms. I have just ordered the book. Thank you.

in reply toib1703

nahypothyroidism.org/how-ac...

F

ib1703 profile image
ib1703 in reply to

Interesting...and a useful site. Thanks.

ib1703 profile image
ib1703 in reply toib1703

Blood test results back yesterday from Full Blood Count, Liver Function and Glucose - doctor was checking out diabetes. I don't have diabetes. Liver test - the ALT level is still a little high at 62 (range 0-55). They are putting this down to Thyroid. It was 73 6 weeks ago. They were still saying no change to dose of Levo, I went back to ask again at end of conversation and the recommendation is not to increase and to wait another 6 weeks and then blood test. I then said I wanted it increased and wasn't prepared to wait. Just because I was at the lower end of the range doesn't mean it's right and still have symptoms etc etc. Anyway, we agreed on a further 25mcg to be taken every other day (on top of my 100mcg daily). Started on the new dose this morning. Thank you for you assistance and pointing me to various articles. At the next blood test I will insist on T4 and T3 tests as well as the normal TSH and anything else Thyroid related. The National Academy for Hypothyroidism site states : Recommended tests are TSH, free T3, free T4, reverse T3, Sex hormone binding globulin (SHBG), antithyroglobulin antibody, TPO antibody, ferritin and leptin.

ib1703 profile image
ib1703 in reply toib1703

Actually could I not just cut the 25 mcg pill in half and take it daily?

helvella profile image
helvellaAdministrator in reply toib1703

Yes - you could.

Probably a good idea to get a pill cutter if you don't already have one.

Doctors generally are obsessed with changing doses by 25 micrograms a day. Yours has at least realised that a 12.5 micrograms a day change is achievable by alternate day dosing. But don't forget that there are people out there who do things like take a tiny bit extra one day a week, or take a tiny bit less one day.

ib1703 profile image
ib1703 in reply toib1703

NHS seems to carry out only TSH test after initial findings i.e. ongoing monitoring. For me, the Levo has made a huge difference. Maybe not quite on the right dose yet but probably close. Is the TSH test sufficient in my case? What else would be recommended in my case?

Clutter profile image
Clutter in reply toib1703

ib703, it means Levothyroxine should be taken 4 hours away from calcium, iron, vitD and oestogen supplements.

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