New here and needing help

Feeling terrible with under active thyroid and antibodies and high cholesterol. Medication making me very unwell.

[PurpleNails Administrator]

How long have you been on 25mcg? You’ll need blood levels rechecking and likely need increases of 25mcg (per day) every 6 weeks.

What blood test have your doctor done? for full thyroid you need

TSH

FT4

FT3

TPO & TG Antibodies

Very important to test folate, ferritin, B12 & Vitamin D.

Usually high cholesterol reduces once adequate medicated.

Low stomach acid is also common with hypothyroidism.

You can do a test at home to check theory. Called “the burp test”

First thing in the morning, before eating or drinking anything (& any medication)

1. Mix ¼ tsp baking soda in 4 to 6 ounces of cold water.

2. Drink the baking soda solution.

3. Time how long it takes for a burp to occur. Time it for up to 5 minutes:

4. If you have not burped within five minutes, it may be a sign of insufficient stomach acid. Early and repeated burping may be due to too much stomach acid (do not to confuse this with small burps from swallowing air when drinking the solution). Any burping after 3 minutes is an indication of low stomach acid levels.

I seen others recommend zinc supplements to help improve stomach acid & apple cider vinegar diluted with water as a remedy - but others who know more will hopefully be along to explain better.

If you tell doctor you seem sensitive to other brands but 1 suited you they should be able to name a brand on prescription. Some chemists are more helpful with sourcing brands than others - some are blaming a stock supply from within their company less often there is a manufacturing supply.

It is common to feel a little better initially & then for symptoms to resume again, it’s because initially the dose add a top up of missing hormones but then as the thyroid was struggling it becomes a replacement of hormone levels.

That’s why gradual increases are expected.

Are you -completely- gluten free. Gluten common issue with autoimmune thyroiditis (Hashimoto’s).

[Hidden in reply to PurpleNails]

I don’t know what blood tests I had. How do I find that out. I did the low stomach acid test and it was low, I can’t eat protein because I can’t digest it. I don’t know how to fix it so I can eat properly. I have been gluten free since November 2013. That is good that my cholesterol will come down as my thyroid is controlled. What brand of levothyrine has the least side effects.Thanks for telling me it is usual to feel better then not so good and it is a gradual thing. I will ask for B12 and other tests that you said.Chemist us saying Workhardt they can’t get and I have allergies to binders and fillers. It is probably the acacia. It is giving me a lot of pain. Thanks for replying Purple Nails. I don’t understand about thyroid blood tests and I can’t see a doctor it is just a phone call so I am very confused . Thanks appreciate your advice..

[PurpleNails Administrator in reply to Hidden]

Firstly Doctors never clearly explain results - or offer exact figures.

It’s an easier job if you don’t know what they are testing & it they just say your ok or you need this and trust them without question - You need to start tracking your own results.

You are legally to your results. The only stipulation is the doctor has viewed them first. Then the record usually get filed on the system, then you can view them.

Does your practice officer online access? England is contractually mandated to supply other areas vary. Set up full access if available. Very useful as includes notes, letter ect. This can take some time to process.

If not ask receptionist for copy of blood test results. Don’t accept verbal or hand scribbled results you need a printed copy of results with lab reference range. (Ranges vary between labs)

Telephone in advance and allow a day of two to print & collect later if necessary.

[Hidden]

Thanks for that information purple nails I will try to do what you advise

[JAmanda]

I’d get some tests done privately so you know where you are. Get t3 tsh and t4?tested and if you want to spend a bit more, get your vitamins and minerals tested too. Medichecks does an Advanced Thyroid set and Monitor MyHealth does similar. You can get the blood drawn at your local hospital and pay an extra £30.

Do note that sometimes it seems you’re reacting badly to the Levo but actually it’s your body just adjusting. Or it could be that you’re just very under medicated and need an increase - hence the need to really see where your thyroid levels are at.

[Hidden in reply to JAmanda]

Hello JAmanda. Thanks for information and advice.

[McPammy]

If you have issues with binders or fillers(excipients). You can request a trial of liquid Levothyroxine which has much less in. As advised please ask the receptionist for your recent blood test results then post them on here for helpful feedback on your next steps. You need to aim for a TSH of around 1.00 definitely under 2.5. Your T3 and T4 levels need to be optimal for you specifically to achieve this. This is where you’ll feel much better. Most GP’s do not understand thyroid conditions well. If you feel you are getting nowhere with your GP then request a referral to an Endocrinologist. You can always go private too. Thyroid U.K. provide a list of sympathetic private endocrinologists. I had to go private to get myself properly diagnosed and to get well. You can also request via your GP surgery to have online access to all your NHS records. This is widely available to all. If you don’t have this access already you/we are all entitled to printed copies of our blood results for starters. Your NHS record belongs to you. Not your Dr or the NHS. My own GP informed me of this.

Good luck and post your results on here as soon as you can.

[helvella Administrator Thyroid UK in reply to McPammy]

You can request a trial of liquid Levothyroxine which has much less in.

Excipients in levothyroxine oral solution versus levothyroxine tablets – Wockhardt only. Other makes will vary.

The idea that levothyroxine oral solution products have less (or fewer!) excipients than tablets appears to be mis-placed.

Whether we consider the number of excipients. Or the quantities.

(The excipients are different substances so switching might avoid intolerances. And absorption will almost certainly be better from oral solutions.)

Weight

A typical 5ml dose of levothyroxine oral solution would weigh around 5 grams.

A typical levothyroxine tablet would weigh around 100 milligrams. (I think many weigh less; a few might weigh more. This is just a typical dose. If you need multiple teaspoonfuls of levothyroxine oral solution, or take multiple tablets, that would have a significant effect.

But that 5 gram dose would inevitably be many times the weight of any conceivable tablet dose. (Even if we remove the purified water from our consideration this holds true.)

Number of excipients

Wockhardt Levothyroxine 25micrograms/5ml Oral Solution

Citric acid monohydrate

Sodium methyl parahydroxybenzoate

Sodium propyl parahydroxybenzoate

Propylene glycol

Maltitol, Liquid

Sodium Hydroxide

Hydrochloric Acid

Sodium Hydroxide

Purified Water

A total of nine excipients.

Wockhardt Levothyroxine 25 micrograms Tablets

Lactose

Sucrose fine powder

Maize starch

Magnesium stearate

A total of four excipients. Even if we exclude purified water, there are twice as many excipients in the oral solution.

Documents checked on 2022/07/24

[Hedgeree in reply to helvella]

Thanks helvella for highlighting the excipients in solution and tablet forms of Workhardt as an example.

I'm aware of your 'big book' of important information but have yet to look.

You've shown that the liquid solution contains maltitol which is something that I've reacted badly to in the past (it was in some biscuits I ate) So I now avoid maltitol and other sugar alcohols in processed products as it was an unpleasant experience.

If I get levo prescribed I will use your document to carefully check excipients.

[helvella Administrator Thyroid UK in reply to Hedgeree]

I just hope it didn't come across as pro- or anti- tablets or oral solutions! Horses for courses - whichever works for the individual.

[Hedgeree in reply to helvella]

No not at all. You just pointed out the lists of excipients.

As you say it's whatever suits the individual concerned.

[Hidden in reply to helvella]

Thanks for information. Wockhardt only has four ingredients in the tablets that is why it is the only one I can take. Have some now thank you.

[McPammy in reply to helvella]

I’m at a loss with excipients in tablet form or liquid form. I do know I do feel better on liquid Levothyroxine rather than tablets. Maybe it could be due to a better dosing regimen I now do. Thanks for the info.

[helvella Administrator Thyroid UK in reply to McPammy]

It seems entirely reasonable/understandable to feel better on one product rather than another - whether one tablet/oral solution to another, or switching between tablets and oral solutions!

I suspect what you really care about is the very simple fact that you feel better! And very glad that you do.

[Hidden in reply to McPammy]

Hello McPammy. Thanks for all your good advice. I keep speaking to different doctors only on the phone as they are not seeing anyone face to face. I am so unwell and so confused. I have just been diagnosed but been getting worse for years. I have under active thyroid with high antibodies which doctor said is caused by Hashimotos or something else. I always have trouble with excipients in all tablets. My husband confronted the pharmacist and he backed down and we got them at Boots not far away from us. It is disgusting that they lie to people that are unwell. We have thought of going private. I think it is the only way like yourself that I will get well. I would also like my records that like you say belong to me. Thanks for your kind reply. Will let you know how I get on

[McPammy in reply to Hidden]

Please keep pushing forward with positive mind and thoughts. There is a way out of all this. Private might be you answer.

[SlowDragon Administrator]

Are you saying you have been left on just 25mcg levothyroxine ever since starting in 2013!?

Standard STARTER dose levothyroxine is 50mcg

Levothyroxine should be increased slowly upwards in 25mcg steps until, typically on at least 100mcg levothyroxine per day (unless you are extremely petite)

Levothyroxine doesn’t “top up “ failing thyroid, it replaces it

ESSENTIAL to be on high enough dose

Insist on full thyroid, including thyroid antibodies and vitamin testing

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Are you currently taking any vitamin supplements?

Low vitamin D, folate, ferritin and B12 are EXTREMELY common when hypothyroid and under medicated

If GP can’t/won’t test …..test privately

Do private testing early Monday or Tuesday morning

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[SlowDragon Administrator]

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.

It can be difficult to increase dose levothyroxine if been left extremely under medicated

Likely to need to increase SLOWLY

Perhaps cutting a 25mcg tablet in half to get 12.5mcg to take alongside 25mcg everyday…..so 37.5mcg daily

After 6-8 weeks…either retest ….or just increase again ….up to 50mcg daily

Request increased number of 25mcg tablets per month so that you can stay on Wockhardt while increasing

Then retest as recommended

Meanwhile working on improving low vitamin levels essential

Come back with new post once you get thyroid and vitamin results

Suspect you will be able to tolerate different brand, once on higher doses. But best to not change brand while increasing

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight (as an approximate guide) is 1.6mcg levothyroxine per kilo of your weight per day

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested and is completely inadequate

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

[Gingernut44]

If you know that a certain brand suits you best, ask your doctor to name it on your prescription - it can be done, so don’t be fobbed off with them telling you it can’t. The only brand I can tolerate is Wockhardt and it is noted on my prescription. If your usual pharmacy tells you they can’t get it, ring around every pharmacy in a 10 mile radius until you find one that has your preferred brand. That’s what I had to do. I rang 9 in total before I found one who said yes. They also told me that they would keep a good stock in for me. As this particular pharmacy was in a village 6 miles away, I asked my GP to give me a prescription for 2 months at a time which he did. I’m afraid you have to be proactive when you know what you want.

[Hidden in reply to Gingernut44]

Hello Gingernut44. My husband confronted the pharmacist who said he couldn’t get Wockhardt and we found that Boots chemist had some. He was very sheepish with my husband where he was rude to me. We got some at Boots and the pharmacist said he could get them. I have had to fight pharmacists and doctors lots of times for the right medication. I have fibromyalgia and the generic brands were making me very unwell so I had to fight both the doctor and the pharmacist for the brand name. Thanks for answering that you can only take Wockhardt. I will get it put on prescription for two months like you. As I am so unwell my fight has gone so my husband sorted out the pharmacist. It is disgusting that they lie to people when they need understanding and care.

[Gingernut44 in reply to Hidden]

I’m afraid it’s the “can’t be bothered” attitude that gets me. They have no idea that different brands don’t suit everyone. Most GPs and pharmacists think levo is Levo. I’m glad your husband stands up to them on your behalf.