Oral Solution Levothyroxine - GP is denying me my repeat prescription after it normalised my TSH

[Haveaquestion]

I have just been denied my repeat prescription of 100mcg Oral Solution after being on it for months. I was switched by my GP to the liquid version after my TSH resulted in abnormal levels (from being consistently below 1 for years) over the course of a year of increasing dosages. My TSH normalised to 0.9 just after six weeks of being on the liquid form. I did well and had no more symptoms. The GP who owns the surgery has just called me out of the blue claiming there's no reason I should be on liquid form. She took me in circles about how I need to prove I have absorbtion issues, to saying my thyroid is detoriating and just needs a higher dose of the pill, to then claiming the oral solution is out of stock nationwide and has made the decision to put me back on pills! That couldn't be further from the truth because the pharmacy has confirmed they have a couple of pharmaceuticals that supply them. I don't know what are her motivations for wanting me off the liquid version when the NHS is paying for it? She is insisting that I be switched to pills despite me trying to conceive for >2 years, knowing my TSH levels was abnormal on the pill and normalised on the oral solution. This is at a time where I'm pursuing IVF privately because this surgery had delayed my referral to Reproductive Medicine by 6 or so months after my endocrinologist from the hospital had requested that my GP do so. I'm afraid I'm going to be pursing IVF only to loose a baby with my TSH being brough back to what it was before the oral solution. I'm at a loss at why a GP would do this - she has said she will consult an endocrinologist about why I would need to be on a liquid formulation but she is still switching me back to pills. What can I do about this? It feels so cruel.

[Jaydee1507 Administrator]

Oh this is just terrible and I'm sorry. Firstly there is a cost implication. Pills cost pennies a month and the liquid version costs probably best part of £2-300+ a month. The cost will come from their practice budget, which although in the end comes from the NHS, it still reflects on the doctors practice and whoever writes your prescriptions.

I have a prescription for the liquid levo myself and there has indeed been stock issues lately which I experienced myself as is another member of this forum. Your GP may have to rewrite your prescription for a different strength of the liquid - 125mcgs/5ml as opposed to 100mcgs/5ml. Even stocks of that are extremely limited, probably dependent on area and as mine was handed to me I was told it is like gold dust and to look after it!

I'm not sure what the regulations and restrictions are around the presciption of liquid Levo. They may possibly relate to intolerance of the pills which if you had might be useful.

If this were me I think I'd be writing a strongly worded email to the practice manager demanding reinstatement of my liquid Levo on intolerance grounds and refusing further treatment until it's reinstated.

[Haveaquestion in reply to Jaydee1507]

Thank you very much for all that information and suggestions. I think it's a lost cause discussing this any further with the GP given how adament she is. She has expressed no care about my TSH reverting to abnormal when I have explicitly told her I'm trying to conceive and need my TSH stable. Who/how can I escalate this further?

[Jaydee1507 Administrator in reply to Haveaquestion]

A couple of times I've had issues I've just emailed or talked to the practice manager and never had to take it any further. I'm sure she has no idea how it will affect you and maybe the supply issues have made her think again about the prescriptions cost. That's all irrelevant though as you need the prescription.

Maybe phone a few local chemists to check they can get it also. Forewarned is forearmed. Remember it is available in different strengths so if one strength isnt available ask if a different one is. Good luck!

ombudsman.org.uk/sites/defa...

[Jaydee1507 Administrator]

PS The government are backing you up. Throw this at your GP.

gov.uk/drug-safety-update/l...

[Haveaquestion in reply to Jaydee1507]

Thank you for this!

[Regenallotment in reply to Jaydee1507]

and at no point does that say ‘switch her back into pills right when she needs stable levels to conceive and maintain pregnancy’.

[SlowDragon Administrator]

which brands of levothyroxine tablets have you tried?

usually liquid levothyroxine initially prescribed by endocrinologist because of the cost

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

[e-mail]

[Haveaquestion in reply to SlowDragon]

I have tried Euthyrox by Merck(when living in a different country), Eltroxin, Teva.

[SlowDragon Administrator in reply to Haveaquestion]

If you have to go back on tablets

Try splitting your levothyroxine tablets into 2 smaller doses, waking and bedtime

ESSENTIAL all four vitamins are tested and optimal

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long 

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Liquid levothyroxine is approx £120 a bottle so it’s difficult to get prescribed. Tablets are £1 a pack

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[Retteacher in reply to SlowDragon]

I am lactose intolerant and reacted to all the levothyroxine tablets containing lactose with intense itching. Eventually a year ago I found the Aristo tablets made in Berlin. I have had no problems with them, but today my pharmacy told me that they cannot get them- one wholesaler went bust and another will only supply 50 packets with a use by date of October 22. Does anyone know where one can get this brand?

[helvella Administrator Thyroid UK in reply to Retteacher]

Have a read of this recent post of mine:

healthunlocked.com/thyroidu...

The distributor which went bust has, I believe, now been taken over as a going concern. (Or will be after legal issues have been agreed.)

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

[SlowDragon Administrator in reply to Retteacher]

There’s currently 3 lactose free brands levothyroxine available (in theory)

Teva - widely available in all sizes

But also contains mannitol

Have you tried Teva

Aristo - only available in 100mcg tablets

Glenmark - seems very difficult/impossible to locate

Your GP must acknowledge on your prescriptions that you need lactose free levothyroxine

I would agree with waveylines write everything down re what brands you have tried and send letter to Practice manager and GP

[Retteacher in reply to SlowDragon]

I reacted to Teva and have never found any Glenmark. When one looks at online pharmacies in Germany such as Versandapo.de they have Aristo readily available, but only on prescription. Does this mean I have to get a private prescription or will they accept a letter from our GP?

[helvella Administrator Thyroid UK in reply to Retteacher]

I am not sure how readily German pharmacies accept UK prescriptions now, if at all.

Has anyone managed to contact Glenmark to find out why their levothyroxine is so poorly available?

Have you seen my post about Aristo?

healthunlocked.com/thyroidu...

[Jaydee1507 Administrator in reply to helvella]

I just phoned Glenmark and was told to email, which I have done. Will get back to you with their response.

Now that (allegedly) there are a couple of lactose free options I would like to save my GP practice the cost of Levo liquid, but if supply is an issue that won't be happening!

[McPammy]

I can only imagine that the reason your GP wants you off liquid form levothyroxine is down to costs. It’s about £100 a bottle whereas tablets are pennies in comparison.

You could argue that you have difficulty with the excipients in tablet form over liquid form.

I get Wockhardt brand which is noted also on my prescriptions. I’ve had no issues at all obtaining this brand. My pharmacy gets it for me direct from Wockhardt which is based in Wrexham North Wales. They do not charge for the delivery to the pharmacy either. It may take a couple of days longer max to get it through this route rather than their wholesalers normal route. But that’s fine.

I’d argue you need it to reduce excipient’s. That’s why I was prescribed liquid form.

It must a a real worry for you. You could always contact PALS also to put your case forward. Or speak to the practise manager explaining your concerns and that you may have to involve PALS. That’ll make them listen.

[ThyroidThora]

Hi,

I think the main reason your liquid thyroid medication has been removed is…COST! I was on T3 following thyroid cancer removal which, my GP was told to prescribe by my specialist. My GP just removed it from my repeat prescription and left a voicemail on my mobile saying it was a red lighted drug and to go back to the hospital. This happened on 5/01/2020 shortly before the pandemic and I’ve the hassle of getting my medication from the cancer hospital instead. I wouldn’t mind but my GP surgery don’t care that I cannot drive and it takes me two and a half hours to get to the hospital and the same for the return journey. I lost my job to the cancer and it costs a lot of money catching buses and trains that cross the boundaries.

As regards your GP saying your thyroid is deteriorating is bunkum! The pituitary gland in the brain produces (TSH) thyroid stimulating hormone which tells the thyroid to make T4, T3, T2 & T1. Fight for what you need and don’t give up. It took me 5 years of perseverance to finally get the thyroid meds I need to make me feel better.

Good luck x.

[Haveaquestion in reply to ThyroidThora]

Wow! I'm sorry you went through all that. 5 years is a long time!

[ThyroidThora in reply to Haveaquestion]

Hi,

Have you thought about trying natural dessicated thyroid (NDT)? I was on all the synthetic hormones but couldn’t tolerate them, they were slowly killing me! Then I was put on a trial of NDT and it was like a miracle, I could do things I couldn’t on the synthetics. Then they took me off it and back on the synthetics and I was back to square 1, hence the fight for 5years to get the NDT I need to live. Perhaps you could give it some thought, do some research and then decide.

Good luck.

TT xx.

[waveylines]

What an ignorant arrogant GP!

Write a formal letter to the practise manager to complain about the GP. Do a potted history of how you tried different tablets but was moved across to liquid due to intolerance. Explain that you are undergoing specislist help to conceive and its vital that changes are not made to your thyroid at this critical point.

Ask that your liquid levothyroxine is restored. Id add that you will be contacting your specialist re this prposed change.

State in you letter that yu want ure letter to be added to your nedical file.....they wont like this as they worry about liability.

I doubt your specialist will be impressed by this stupid GP!

Dont allow them to get away with this. Last resort would be to negotiate this script with a different GP Surgery and move practise if u dont get joy.

I feel outraged for you!!

[Haveaquestion in reply to waveylines]

Thank you, I've done so. The surgery is beyond redemption - I was also just denied a doctor's appointment after being booked in for a same-day appointment.

[waveylines in reply to Haveaquestion]

soubds like you need to change surgeries.....are there any other options? If so Id approach the Practise manager of the new surgeries first to adk if thry eill prescribe liquid levothyroxine as recommended by your specialist. I did this quite a few years back....& changed once my meds were agreed. Xx