Newbie Hypothyroid - all tips and advice welcom... - Thyroid UK

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Newbie Hypothyroid - all tips and advice welcome please.

Tired2022 profile image
14 Replies

Hi

I was diagnosed low thyroid in August and given 25mcg levothyroxin. I felt a bit better after taking it.

I am a self employed single parent with two disabled children. I have not been able to work very much for over eight months now and the house and garden are in a horrendous state. Nothing except the bare minimum is done. I am so tired and can't concentrate.

I have also put on over 20kg in the last year after always being slim and now tipping into the overweight range. I have never done a weight loss diet til now and I have just read that low carb diet might make my thyroid symptoms worse.

I have a blood test just now and the GP said might need more meds. If I continue like this I will need to give up my business and find another way to earn money. Currently I can't do enough hours to meet my financial commitments and people have been very patient but wearing thin now.

What do I need to know about eating, exercise, anything else to help me feel better, have more energy and get back on track?

Thanks so much for reading :-)

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Tired2022 profile image
Tired2022
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14 Replies
greygoose profile image
greygoose

Hi Tired2022, welcome to the forum.

Frankly, it's not about exercise and diet, it's about getting the right amount of the right thyroid hormone replacement, and getting the correct testing done.

Of course, eating well is essentail for general health, but if you're hypo, nothing you can eat will make your thyroid work again.

Where 'food' is concerned, there are three things you need to avoid (and I don't even consider them to be food!): artificial sweeterners, processed seed oils and - most importantly - all forms of unfermented soy - soy protein, soy oil, soy flour, etc.

Apart from that, just eat what makes you feel good - a balanced, diet of fresh fruit and veg, protein and fat - and don't forget the salt!

It's true that a low-carb diet can make your thyroid symptoms worse, because it can affect your conversion of T4 to T3. But, then, low-calorie diets can have the same effect. No sort of weight-reducing diet is recommended when you're hypo, because it's not over-eating or lack of exercise that has made you put on the weight, and the weight-gain is more than likely water-weight, anyway, rather than fat.

As for exercise, it's very bad to over-do it. Just gentle walking or swimming to stop you rusting up, until your thyroid hormone replacement is optimised.

Second most important tip I can give you is to always ask for a print-out of your results. If you are in the UK it is your legal right to have one - but ask the receptionist, not the doctor! You need to know exactly what was tested and exactly what the results were - we can help you understand them.

It's important to take your levo on an empty stomach and wait at least one hour before eating or drinking anything other than water. And take it two hours away from other supplements and/or medication. Four hours for iron, calcium, vit D, magnesium and oestrogen.

On the day of the retest, make sure you have an early appointment - before 9 am - and fast over-night. Leave a 24 hour gap between your last dose of levo and the blood draw. When you have your next retest, ask the doctor to test your nutrients: vit D, vit B12, folate, ferritin. Because these need to be optimal for optimal use of thyroid hormones by your body.

That's all I can think of for the moment. :)

Charlie-Farley profile image
Charlie-Farley in reply to greygoose

I’m tagging someone in who might find of interest Rymer

Joyya

Jaydee1507 profile image
Jaydee1507Administrator

My best advice right now would be to be kind to yourself. You are on the lowest dose of levothyroxine at the moment and it will take a few months of regular tests and dose increases to get you to where you can function better. In the mean time, get as much help with the children as you can and don't beat yourself up if things start piling up around you that you can't deal with right now.

Learn as much as you can about the condition so you can advocate for yourself better as you will need this later on.

Vitamin levels are important to us as being hypo means we don't absorb as well as we should. See if you can get your GP to test for ferritin, folate, B12 and D3. Post the results you get here.

PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum

Do you have access to results?

Either online or obtain a printed copy of results (with ranges) from practice. 

You need to know what doctors is testing & going by as they don’t always complete a full thyroid function test. 

Once you have the information you can start to track your own results and advocate to improve your health. 

For full thyroid you need 

TSH

FT4

FT3 

TPO & TG antibodies 

Also important to test 

Folate 

Ferritin 

B12

Vitamin D

If Doctor can’t / won’t test everything there are private options we can advise on. 

25mcg is lower that standard staring dose (50mcg) do you know why? usually 25mcg is for older or those with heart issues. 

Has this dose been increased now? 

Initially replacement tops up levels but then thyroid often reduces output and symptoms return - an further increase is required. 

Which brand do you have? Some do not suit everyone.  stick to same brand & watch out for different brands depending on dose prescribed. eg not all produce  a 25mcg.

Test consistently - book appointment just before 09.00 or as early as possible, fast overnight (only water - lots for hydration & easier blood draw) delay levo until after draw, & avoid supplements containing biotin 3 days before draw (can skew results in testing process) 

Charlie-Farley profile image
Charlie-Farley in reply to PurpleNails

Hi PurpleNails

There are loads of people being started like this - I was and then left. Where is this coming from 😱. Two people last week put on 25 this and left on it for months. Let’s hope with forum advice Tired2022 can get sorted quickly.

PurpleNails profile image
PurpleNailsAdministrator in reply to Charlie-Farley

It’s Doctors applying cautious (1 size) approach to all, instead of considering some would be better starting higher & fine tuning dose sooner.  The steps being are left months between test is wrong.   While it’s necessary to allow some time for doses to properly settle - prolonging it is just a way to mark job done and manage time constraints.  

Charlie-Farley profile image
Charlie-Farley in reply to PurpleNails

I mapped my symptoms whilst going through the dose increases and my body needed the increases more quickly than the arbitrary ‘come back in three months’. I have no idea where they draw these protocols from but it bares little or no relation to the NHS guidelines. There is a lot if latitude there if they would but use it. They simply don’t know enough about the thyroid or a more overarching skill of data interpretation to make an informed judgement on anything test related. They just drop kick people between upper and lower ‘limits’ of the range and think job done and set most store on least reliable measure in any case.

Just outstandingly dull. 🙄

SilverAvocado profile image
SilverAvocado

Tired2022,

The only thing I can think of that others haven't mentioned is that 25mcg of Levothyroxine is very much a starter dose. Many people will actually feel worse on this dose than they did before medication, because it is enough to disrupt your own thyroid supply but not really enough to give replacement.

Best practice is to have your bloods retested and your dose adjusted every six weeks to start with, but it is common to be made to wait double that time. Each time expect the dose to be adjusted by 25mcg, at first hopefully you will have a few increases, but you may need decreases later. It can easily take six months to get to your own ideal dose and start to feel better, and will often take longer.

Unfortunately it is often the case that your doctor won't offer you the full treatment and testing you need and we have to fight for it. Your thyroid hormone dose should be provided, so be prepared to push for that, but you'll almost certainly have to get your own private tests for the vitamins that have been mentioned. If you find you're a more complex case for your thyroid needs you will probably have to pursue that yourself, too.

SlowDragon profile image
SlowDragonAdministrator

I was diagnosed low thyroid in August and given 25mcg levothyroxin. I felt a bit better after taking it.

so you’re now ready to increase the dose to 50mcg …..bloods should be retested 6-8 weeks after each dose increase in low

50mcg is the standard starter dose of levothyroxine, so GP was being cautious starting you on only 25mcg

Likely to need several further increases in levothyroxine over coming months

Meanwhile request GP test vitamin D folate, ferritin and B12 plus thyroid antibodies

Approx 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

approx how much do you weigh in kilo

Typically dose levothyroxine is increased slowly upwards in 25mcg steps over 6-12 months until on full replacement dose of approx 1.6mcg levothyroxine per kilogram of your weight per day

Some people need higher dose…..a few need less

SlowDragon profile image
SlowDragonAdministrator

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Tired2022 profile image
Tired2022

Thanks for getting back to me. I will go through and follow up your suggestions.

I have had previous adverse reaction to medication so am generally reluctant to take anything. Also, my brain was not working properly on the day and I couldn't hold on to what the GP was saying and she thought I was arguing when I was repeating. I'm still not sure if she said that I should or shouldn't eat food containing iodine!

Luckily my GP is online so I can easily access test results.

These are my results from Aug:

Serum free T4 level 9.8 pmol/L [11.4 - 21.4]; Hypothyroid.; Below low reference limit

Serum TSH level 11.90 mIU/L [0.27 - 4.2]; Above high reference limit

They also did a full blood count and diabetes (I don't have diabetes).

Full blood count

Total white blood count 10.4 x10^9/L [4.0 - 11.0]

Red blood cell count 4.42 x10^12/L [3.8 - 5.8]

Haemoglobin concentration 136 g/L [115.0 - 165.0]

Haematocrit 0.408 L/L [0.37 - 0.47]

Mean cell volume 92.3 fL [76.0 - 97.0]

Mean cell haemoglobin level 30.8 pg [27.0 - 33.0]

Mean cell haemoglobin concentration 333 g/L [300.0 - 360.0]

Red blood cell distribution width 13.6 % [9.0 - 15.0]

Platelet count - observation 277 x10^9/L [150.0 - 450.0]

Mean platelet volume 11.2 fL [7.5 - 11.0]; Above high reference limit

Neutrophil count 7.1 x10^9/L [2.0 - 7.5]

Lymphocyte count 2.3 x10^9/L [1.5 - 4.0]

Monocyte count - observation 0.8 x10^9/L [0.2 - 1.0]

Eosinophil count - observation 0.2 x10^9/L [0.0 - 0.5]

Basophil count 0.0 x10^9/L [0.0 - 0.2]

Nucleated red blood cell count 0.0 x10^9/L [0.0 - 0.1]

< 3.4 mmol/L recommended

3.4 - 4.1 mmol/L - moderate risk of C.H.D.

> 4.1 mmol/L - high risk of C.H.D.

LDL Cholesterol has been calculated using the Freidwald equation.

This equation is only valid if the patient is fasting.

Serum cholesterol level 5.5 mmol/L [< 5.2]; !; Above high reference limit

Nurse phoned me about cholesterol. Said to lose weight and exercise more...

I weigh 71KG

I can see that this does not include many of the tests recommended. Are they all still needed, looking at the above, please?

Thank you again. Your advice is so helpful.

Charlie-Farley profile image
Charlie-Farley in reply to Tired2022

Hi Tired2022

Firstly any mention of statins - say no. If you are hypothyroid or under medicated this raises cholesterol. Statins can also cause tissue damage - NHS guidelines.

I calculated my potential optimal dose if Levothyroxine using NHS GUIDELINES.

I was 15 stone and needed approximately 150ug.. I got it but had to explain to a different GP each time why. They are taught nothing and know little.

So 25ug is a CHILD’S starter dose or for someone over 60 with a heart condition. They did it to me too! If you read my profile and crib (latest post) it may well be very pertinent to help you get ahead of the curve. Please remember Your Symptoms are Important- doctors should treat the patient not the lab-work.

Brilliant advice from the forum members above - dream team

Tired2022 profile image
Tired2022

Thank you. I am so grateful for all the help.

Tired2022 profile image
Tired2022

Hi, I'm seeking wisdom again as I am so confused/frustrated. I chased up the GP yesterday and the receptionist said my blood tests results weren't back, but I have online records and this was posted this morning. The GP had messaged the results to me with no advice and on the record he put to continue the 25mcg. I have actually started taking the 50mcg which is better than I was before but now just having greater insight into how much difficulty I am having. Anyway, these are the results, please let me know your advice. Thank you.

Result Borderline

What you need to do Communicate Patient

Specimen

Specimen Type: SERUM

Collected: 04 Oct 2022

Received: 04 Oct 2022

Pathology Investigations

Serum free T4 level 12.6 pmol/L [11.9 - 21.6]

Serum TSH level 6.79 mIU/L [0.27 - 4.2]; Above high reference limit

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