Advice please on latest results.

[Wua13262348]

Very confused what my next step should be re. dose of Levo and brand of liquid Levo to aim to continue on, though stock shortages may not allow a choice. Previous bloods indicate Central Hypo. Now have 3 nodules on thyroid, U2 type.

Started Levo 8/3/22 on 25mcg tablets and changed to 50mcg liquid levo 22/7/22 . Liquid levo 75mcg from 20/9/22 to date.

Results 17/2/20 TSH=1.84 (0.27-4.2), FT4=10.6 (12-22), FT3 not done (12.10p.m)

minus 14%

13/3/20 TSH=1.80 (0.27-4.2), FT4=10.00 (12-22), FT3 not done (12.10p.m)

minus 20%

Results 24/2/22 were TSH =4.02 (0.27-4.2), FT4 =5.5 (12-22), FT3 =6.5 (3.1-6.8) (12.10p.m)

minus 65% 91.89%

12/5/22 TSH=1.87 (0.27-4.2), FT4=8.4 (12-22), FT3 not done (12.10p.m)

minus 36%

12/9/22 TSH=1.16 (0.27-4.2), FT4=12.7 (12-22), FT3=5.87 (3.1-6.8) (12.10p.m)

7% 74.86%

3/10/22 TSH=1.32 (0.27-4.2), FT4=14.4 (12-22), FT3=5.71 (3.1-6.8) (9.55a..m)

24% 70.54%

21/11/22 TSH=0.97 (0.27-4.2), FT4=18.8 (12-22), FT3 =5.9 (3.1-6.8) (12.10p.m)

68% 75.68%

23/1/23 MMH said blood clotted and errored test, even though tube filled with blood at G.P .surgery.

20/3/23 TSH=0.14 (0.27-4.2), FT4=20.3 (12-22), FT3=5.2 (3.1-6.8) (12.10p.m)

83% 56.76%

Liquid levo dose of 75mcg is 7.5ml from 50mcg strength bottle, until forced from 1/1/ 23 onwards to dose 3ml from 125mcg strength Zentiva, as that was all that was available. McPammy has also reported that dosing 68mcg, from a 125mcg strength Zentiva liquid levo bottle has also drastically reduced her TSH and increased her FT4. She also reports that the appropriate dosage scaled up from a 25mcg bottle does not work for her either.

In the past I have had to accept liquid teva, brillpharma, wockhardt, and now zentiva.

Currently, with difficulty, I can get Teva or Zentiva. From the above , I wonder if it would be best to aim to always dose 7.5ml from 50mcg strength for 75mcg dose or more, rather than 125mcg strength????

I had expected that my results 20/3/23 might, or might not , be substantially different because of my Selenium status. The last thing I needed was to find that Zentiva is suspect, too. I expect my G.P. will be very paniced by my latest results and on how to proceed dose wise going forward.

The issue with Selenium is that I started supplementing it at 200mcg daily, from 1/8/22.

I tested it 21/11/22 and was 441.18% through the range after 120 tablets. I stopped taking it 1/12/22. I retested it 20/3/23 and it is 142.86% through the range. My selenium is up-regulated because I have a double homozygous CBS mutation, handed down from both parents.

The adrenal expert Dr. Lam highlights up-regulated selenium with a CBS mutation, as does Izabella Wentz.

Changing levels of selenium, I have read, will have a corresponding effect on zinc and copper.

My zinc was 13.56% through the range when selenium was 441.18%. Zinc is now 43.09% through the range when selenium is 142.86% . My copper is 35.37% through the range. I do not know where it was previously. I believe that it is usually zinc that is lower than copper. In my case , zinc is higher than copper. I have 9 genetic mutations , all marked benign for copper.

As my readings are for Central Hypo, the TSH should be ignored. However, TSH dropping to 0.14 has lowered my FT3. I was previously converting at 3.18, whereas now it is a conversion rate of 3.9.

I do not yet really feel that much better at all. In the last few months my hairdresser has commented that my hair is much,much thicker, in really good condition, and that there is less grey, and it seems to now be ash that is coming in. I am grateful for it, but it is not much to show for nearly a year on levo!

Out of the blue , on 17/1/23, I passed a lot of blood in my urine, on one occasion only. For the 6 days previously I had dosed 1 drop (800mcg) of retinyl palmitate (VitA) sublingually. In case that was responsible I have not taken it since. Since then , I am having to get up more than once to urinate during the night, when previously , I never did before. There is a smell which I cannot identify as fishy, sweet or like ammonia, but not all the time. The nearest is probably fishy. Sometimes , like now, at 3.a.m my urine is clear When I get up in the morning it will smell, and will not be clear for most of the day..Since I am 65 I expect the G.P. would put it down to age. I have no pain or discharge with it. I am reluctant to take antibiotics as they would kill all the good bacteria in my bowel, if I have any. I cannot take mannose for it. Does this resonate with anyone?

Dr. Toft , in Pulse magazine, said that in Hypo( presuming Primary), that you should aim for FT4 to be in the upper quartile, but that you may need to go outwith the range. When the range is 12-22, 19.5 would be 75%. He expects TSH to be 0.2-0.5.

I would greatly appreciate some expert direction on my next steps as regards dosage, brand etc.

Have my nodules been secreting T3 previously, but on FT4 reaching 83% stopped the nodules secreting T3, as I now have a half decent amount of t4 from levo??? I'm confused. Can anyone enlighten me to what they think is going on, and what I should try to do about it??

[GlowCoach Administrator]

As far as the liquid levo goes my pharmacist (independent as opposed to a chain checmist) has been able to get me Teva brand for the past 2 prescriptions so I am keeping everything crossed this continues. Supplies have been so rubbish its hard to know what to do to be fair. Go with what you think might work!

I also overdosed myself with selenium when I supplemented and then later tested it. I just take one every now and then now to top up as is clearly not something I malabsorb or lack in my diet.

I don't feel qualified enough to comment on zinc & copper other than they need to balance. personally I have left mine alone as I haven't tested them.

How are your key vitamin levels and are you supplementing, if so what with?

[Wua13262348 in reply to GlowCoach]

All key vitamins optimal, and supplement with forum recommendations.

[Wua13262348 in reply to GlowCoach]

Particularly liked your mention of Luminettes 3 glasses in a recent post, which I was totally unaware of. For anyone else who is interested in them, they are £199 on Amazon. Two branches of Cash Converters, however, are selling some for £79.99 plus postage, via internet. They are new and used, but have a 1 year guarantee, instead of the 2 years manufacturer's guarantee. The 1 year guarantee looks as though it has get-out clauses, though. Worked out at £84.98 though, as opposed to Amazon at £199.

A worth while saving!

[GlowCoach Administrator in reply to Wua13262348]

Really pleased to have passed on something useful. I found out about them from a circadian rhythm disorder group. Have to say I'm pretty attached to mine and I'm sure as well as sleep they improve my mood too. Hope they help you.

[Wua13262348 in reply to Wua13262348]

Although Luminettes are sold new and unused from Cash Converters with a 1 year guarantee, I can confirm now that the manufacturer's 2 year guarantee does apply. When registering the guarantee it is accepted if you do not quote sn, or year when quoting the serial no. Quote the number only and it registers the 2 year guarantee.

[McPammy]

Regarding your supply of liquid levothyroxine. I’m now able to get Mercury Pharma oral solution 50mcg. Have you asked your pharmacist to try for this brand. My pharmacy is a local village one. Apparently Boots might be able to obtain Brillpharma 50mcg. I do feel so so much better on 50mcg strength rather than the Zentiva 125mcg strength. My pharmacist told me the higher the strength the higher the cost per bottle.

Wockhardt has informed me by email that their manufacturing plant in the Republic of Ireland has ceased levothyroxine liquid production. So I’m now trying to find a new brand I feel stable on. At the moment I’m on Brillpharma 50mcg but will be switching to Mercury Pharms 50mcg as soon as my Brillpharma bottle is empty. Brillpharma has been fine I’ve found.

Hope you get it sorted soon 🙏

[Wua13262348 in reply to McPammy]

Your comments are much appreciated. It would appear in Scotland , I suspect, that Boots and LLoyds will not now supply liquid levo of any brand. I think it is now policy , linked to money, though they won't tell you that. When Zentiva and Teva definately available at beginning of February, both said they could get no brands at all, except that Boots offer, and have, a ficticious Advanzpharma/Alliance levo on their system ,which never arrives, from a depot very nearby. This ficticious levo has been offered to me since 20/9/22, and never arrives. They are still offering it. They put the phone down on me when I said it is ficticious. The LLoyds pharmacist , however, checked with Boots for me (purely coincidentally) and was told they could get nothing!When Boots in England were handing out Brillpharma previously last year , Boots in Scotland couldn't get it. Currently no Brillpharma available in Scotland, even from the independents. Mercury Pharma and Teva appear to be the same. Brillpharma is the same , except that it has no sodium hydroxide, which the other two have. If at all possible I would recommend you stay on Brillpharma as it seems to be okay for you. If you switch to Mercury Pharma there is sodium hydroxide in it which is not present in Brillpharma. Brillpharma is actually made in 75mcg strength, though your chances of getting hold of any are another matter!! Check the leaflet in your Brillpharma box!

However, bear in mind excipients may change from what are listed on the internet. Wockhardt liquid ingredients changed sometime last year, from what was listed in July per the internet, to product received in July. Xanthan gum , for example, was listed as an ingredient on the internet, but the product did not contain it when it arrived. I think it also had mannitol listed, but did not contain it .The change probably would not have altered your bloods , but if your bloods were out whilst on a steady supply of Wockhardt liquid, this could be why.( Just found something very strange , and interesting ,that I don't understand when went down a Wockhardt liquid rabbit-hole.) Will do a separate post re. this. It may make perfect sense to everyone else, and just me being stupid. It would explain why both your t4 and t3 went up on Zentiva, and tsh dropped.

I got one bottle of the Zentiva 125mcg from England, with difficulty. and started it c. 1/1/23. There was nothing at all in Scotland at the time. The English supplier could not get me anything at all the following month, but my local independent chemist could now get it, as well as Teva liquid, which became available again at the end of January , per the manufacturer. I had had a repeat prescription for 200ml, 50mcg strength which I took as 7.5ml. This only lasted 26 days, and repeats are reviewed after 3 months. Nightmare! Nice guidelines are for 3 months supply at a time, but I have only recently had a repeat prescription ! A 3 month supply of 50mcg strength would need to be 7 bottles , instead of the two I had been receiving. The cost of the higher strength is not more expensive when it is taken into account that it lasts longer. I previously checked it out in case cost would be an issue.I got one bottle only of the 125mcg strength on my repeat, which did at least last 33 days, and should have the final repeat prescription , which is currently for 125mcg strength, ready to pick up from Lloyds, to then take to the independent chemist, tomorrow. It takes a week for LLoyds to receive the paper prescription and then I need to take it elsewhere. Then it needs reviewed if I get it prescribed again at all!

I think you are right that I would be best to avoid the Zentiva and not cash- in my final prescription in its current form. I need to get it changed to 50mcg strength. Your opinion, and lived experience, is greatly appreciated. You may have provided some insight as to what has happened to me.

Since you consider Zentiva to have over medicated you, then I too, seem to have inadvertently had a dose increase at a time when I was trying to assess if holding a dose of 75mcg which I started 20/9/22, would come good if I held it for an extended period, on the suggestion of Tattybogle, which made perfect sense as she has lived experience of this. I did try to check my bloods at the end of January, but MMH errored them. I don't think my blood was clotted. I think they have assumed an error because the results were so different from my previous test I did with them.

I think I need to attempt to get a prescription for a 3 month supply, to dose from a 50mcg strength bottle. 7 bottles! What my dose should be is another matter???????

It would appear as if increasing T4 with levo is dropping my T3, instead of increasing it??? Conversion may be becoming an issue as T4 increases. Conversion was 3.18, but is now 3.9. My G.P. would likely resist a further dose increase.

If I did increase levo it appears that T3 is dropping. I may end up with a high T4, low T3, and want to trial T3 medication? A difficult path.

If I reduce levo, I seem to be able to hold FT3 at 5.71-5.9, when FT4 is 12.7-18.8. Above 18.8, at 20.3, FT3 has dropped to 5.2. ,unless selenium needs to be 441.18% through the range to achieve this??? Surely 142.86% through the range should be enough??

I will attempt to get a 3 month prescription of 50mcg strength Levo, though I expect that some time in the future only 125mcg Zentiva will become the only option again. I do , however , need to be guaranteed a 3 mth supply to properly get bloods done that reflect a consistent dose and brand.

Can anyone advise what dose I should attempt to get the G.P. to approve?

[helvella in reply to Wua13262348]

I think you should go through the complaints system. (Yes - I know it can be ridiculously hard.) But I've always been under the impression that the contracts pharmacies operate under (with respect to the NHS in whichever nation) require them to supply anything that is legitimately prescribed.

[Wua13262348 in reply to helvella]

I think this must be the reason that Boots keep insisting they can get the ficticious AdvanzPharma/Alliance. I wrote to Boots head office last year and they passed the email on twice to the appropriate dept., for this very serious matter, they said. Never got an answer in the end up. I had a partial prescription outstanding for liquid levo, having accepted a bottle of Wockhardt I had refused in July from Boots, when they could get nothing, 20/9/22. Eventually someone took pity on me and they sourced a 100mcg bottle in England, against my 50mcg prescription that was outstanding. I got it at the end of November.

I really have enough on my plate at the moment, and just really don't need the hassle. If I can summon up the energy(doubtful) in the future, I will approach an MSP who was present in the Scottish Parliament during the Lorraine Cleaver scenario. That being the case, she will be conversant with the problems thyroid patients have already had to endure in Scotland.

I did see recently that it is rumoured Lloyds pharmacies may either close in their entirety, or that many branches will be closed, as I think the company may have been sold or taken over again.

Thanks anyway for pointing this out, but it is a road I do not want to travel.

[McPammy]

I’m shocked that you cannot get any brand in Scotland of oral levothyroxine. Maybe the supply chain is slower there than England and stocks will come through. I hope the same thing doesn’t happen in England or I’ll be in big trouble. Right now I have 125mcg of Zentiva x3 bottles. I was given 4 bottles but I became over medicated on bottle one. So I’m unsure what to do until I speak with my Endo. I also have a couple of bottles of Brillpharma 50mcg which I’m currently using. And yesterday my local village pharmacy gave me 2 bottles of 50mcg Mercury Pharma. I’ve got some stock and safety stock that I’ve managed to acquire. I’m so sorry you’re having such difficulty in obtaining anything. What on earth is going on with these medications through the NHS. Can you contact PALS and find out what is going so wrong. I do know Wockhardt liquid has now ceased production for the UK. Sorry if I’ve already told you this. I’m at a loss of how to offer some clear advice with this situation. But what I did was phone hospital pharmacies and checked their stocks. I got some stock from a hospital pharmacies in January but I had to call several before I found that stock. What they did was to transfer the hospital stock to an on site community pharmacy Lloyds in the hospital grounds. I took a green GP prescription and they dispensed it to me. That was my Brillpharma 50mcg. It was not a easy but I got it!

[Wua13262348 in reply to McPammy]

I cannot enquire at hospitals because I have not yet been seen by an Endo. Think I am on an urgent referral since last May/June. Not likely to be seen in the near future either. My health board at a complete standstill. I have liquid levo which needs to be started by an endo. I have not had an Endo appointment of any kind . Whether an Endo approved my G.P. to give me it, or whether my G.P. authorised it ,I do not know. If the G.P. authorised it and they are paying for it, I don't see the Endo being in any hurry to have the expense transferred to the hospital.

I can currently get Zentiva and teva and i was told advanz pharma, I think, from the local independent chemist. At first she said there was no Teva, but later she said that one supplier can get Teva. But near the end of last year, they could get nothing.

[McPammy]

you could enquire about the stock availability at any hospital pharmacy. They can transfer it for you to a community pharmacy like Boots or Lloyds. then you just take your GP prescription to obtain it. You don’t have to have seen an Endo.