I've just had my latest blood test results after starting 50mg Levothyroxine 6 weeks ago:TSH 1.65 (0.27-4.2)
FT4 15.9 (12-22) 39% through range
FT3 3.4 (3.1-6.8) 8% through range
FT4:FT3 ratio is therefore 4.7.
Just before starting Levothyroxine, my results were:
TSH 5.88
FT4 12
FT3 3.44
FT4:FT3 ratio was therefore 3.5
(Ranges as before)
It seems to me that the Levothyroxine is "doing it's job" of lowering my TSH and increasing my FT4, but as you can see, my FT3 is stubbornly unchanged.
Am I right in thinking that there's something going wrong in terms of my body's ability to convert FT4 to FT3?
Assuming the answer is yes, what are the next steps? I assume my NHS GP won't be able to help and a referral to a consultant endocrinologist probably wouldn't lead anywhere either. However, I do have an "on message" private GP specialising in thyroid problems. Would she be likely to prescribe NDT such as Armor in place of my current Levothyroxine?
If so, how hard is it to get hold of this medication in practice and roughly how much does it cost? I see that Pharmacy2U say they supply it, but they also say to contact them regarding availability and price.
Thank you!
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Schilddruse
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I think it’s way to early to look at conversion issues. I would suggest you need an increase in Levo by 25mcgs. Then retest again in 8 weeks. Only when you have the optimal Levo dose can you start looking at conversion rates. TSH needs to be below 1.
That does show poor conversion - I've had similar. I started on levothyroxine, T4 shot up to top of range, but T3 no change, so I've added T3 with private doc. A good thyroid specialist should suggest T3 as soon as you're showing poor conversion, and especially when your T3 is so low. Raising T4 on its own is unlikely to change anything and might put your T4 over range. Getting vitamins optimal etc. is important as well, but likely won't suddenly make you a great converter, and it takes a long time.
If your private GP is clued up about thyroid, that would definitely be your best shot at getting T3. As you say, getting it through NHS is a nightmare and can take forever via an endo referral - they seem to want you to suffer through as long as possible on T4 only before considering. Private docs have more freedom to prescribe things like NDT and T3. Since you're already on levo, the sensible thing would probably be to ask your private doc to trial adding a small amount of T3 and see how you go. You could equally try changing to NDT, but then you can't control the ratio of T4 and T3 you get. There are also increasingly issues around the quality and consistency of NDT, as well as higher cost. But you need to find what suits you best.
If you get nowhere with the GP, you can try another on the Thyroid UK list of private docs - I can DM you the name of mine if helpful. All else fails, Roseway Labs I think do a prescribing service.
And if you haven't already done so, do consider investigating whether you have low cortisol (saliva testing via Regenerus is the best way) - that can be a reason for poor conversion (mine is terrible), and there are ways to support that to make it easier to get your thyroid function up. Good luck!
Thanks for taking the time to post such a detailed reply - it's much appreciated. I have had salivary cortisol testing done - 3 of the tests were absolutely fine, but the lunchtime one was markedly elevated (stressful day!), so I don't think that's a factor in my particular case.
That's great! In which case you could probably add T3 with little difficulty. Your conversion won't magically get better just by raising T4 loads more and may make you feel more unwell if it starts to go over range, so just be wary of that. You may only need a small amount of each, of T4 and T3, to feel improved, with only a small increase in T4 alongside adding T3.
Thanks again. Fully take your point that adding more T4 wouldn't help and might cause harm. Are you aware of any supply issues with T3 you're aware of and do you know roughly how much it costs?
Not aware of any supply issues. Cost depends on dose and where you get it from. To start with, it can be expensive because the lower-dose tabs cost more, but what you can do is ask for 20mcg tabs and quarter them. So I'm paying £120 for a 2-month supply of 15mcg per day, but that's with 5mcg tabs so that I could start off initially on 2.5mcg doses. I think it can work out to about £30 a month once on a stable dose, more if your dose is high (have a look through previous posts on T3 costs though for more accurate numbers). Then again, if you self-source, my understanding is you can get it more cheaply than that, but always best to go through a doc in first instance.
Pre diagnosis your TSH was high and usually that will drive conversion but you weren’t even converting well in your hour of real need! You could add some levo if you want but in your position I’d start researching T3 as I think you’ll be wanting to do that sooner or later anyway.
Euthyroid people aren’t forced to live for conversion, I dunno why we should be either. X
The body has had more than enough time to show how well it wants to convert the new levels of T4 and it’s made zero improvement … Symptoms tend to respond over time scales like months, conversion supposedly begins almost immediately. It’s just my opinion, I don’t think anyone should be forced to live on T4 mono, it’s not how healthy thyroids function. OP is free to read everyone’s thoughts and decide for themselves what feels best 🙂
Thanks. What you and seveneleven are saying is logically reasoned; in the absence of some cogent explanation to the contrary (which I'm nevertheless open to), I'm inclined to go with it. I'll ask the private GP as I've got an appointment with them at the end of next week.
If you're seeing the doc you asked about on a former post, they are very good about using combo therapy and will take you through everything you need to know, so you'll be grand. Hope all goes well and you can start feeling better soon!
Just wanted to add in that sometimes you just know what your body will like. I knew from the get go that I probably wouldn’t do well on t4 and went straight to combo (NDT). I couldn’t be bothered waiting to see if I converted, life is too short. Lots of people don’t bother with Levo and that is the beauty of having options.
Combination was used for decades before synthetics came along so there is nothing wrong with going straight to it, if that’s what you decide to do ☺️
Ok then my opinion still remains the same it is too early to say you are a poor converter and you are only on a started dose of 50mcgs.
Just my opinion but I would try an increase of 25mcgs and re test in 8 weeks. It can take a long time for your body to adjust fully. The advice on here from experienced members is to go slowly………
Based upon what science is it 'too early to say"? This makes no sense to me- your coversion rate is not going to suddenly magically improve just because you have been on it for longer. That's not how it works. As Hidden says symptoms resolve /repond over time but conversion will already be set by 6 weeks
Thanks. It doesn't make sense to me either; that's why I've been asking for an explanation of the (scientific) reasoning behind the assertion. I may have been missing something.
I can understand the suggestion to add more T4, but I don’t see why it’s too early to judge your conversion. You’re clearly a poor converter by anyone’s standard.
I respectfully disagree. 🤷♀️. To be fair you were complaining your post 7 months ago that you felt terrible on NDT. I am only saying that before trying other (expensive) treatments that the OP tries upping their dose of Levo and allowing their body to adjust.
This idea that T3 is prohibitively expensive is not true. I just bought 500 tablets of 25mcg Tiromel for £49. It doesn’t have to be a barrier for people wanting T3.
But red apple, you don’t need a scientific paper to see that OPs conversion is not improving under the influence of 6 weeks of T4. She’s made exactly ZERO more T3…
In addition Levothyroxine itself won't change the body's own conversion rate because that's determined by other things than the amount of T4 in the system.
I absolutely agree with SarahJane1471 . It is far too early in your thyroid journey to consider adding T3.
First of all you've only been on Levo for 6 weeks. Hormone levels need at least 6 weeks to settle after starting or any dose change, I always leave 8-10 weeks to retest. Also, it can take many months of increases/tweaking after starting on Levo to get to the right dose.
The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. So the first thing to do is increase your Levo by 25mcg now, wait at least 6-8 weeks then retest, if further increases are needed this can be done in smaller increments if necessary but always wait 6-8 weeks before retesting. You need to get that TSH below 1 to get your FT4 up as high as possible.
Before even considering T3, even if you are showing signs of poor conversion, you need to test your key nutrients and if they're not at optimal levels you need to work on those. They need to be optimal before adding T3.
Vit D: 100-150nmol/L
B12: top of range for Total B12, if Active B12 is measured then 100 plus
Folate: at least half way through range
Ferritin: some experts say the optimal ferritin level for thyroid function is 90-110ug/L
You would need a full iron panel test because you'd need to know your transferrin saturation percentage as according to
Because it's too early for your hormone levels to have settled. As I said, it can take many months for them to settle, you've only been taking Levo for 6 weeks, things happen slowly in hormone world and we have to be patient, it can take a long time to get there. It is way to early to be looking at conversion.
I certainly would not hang about on levo with conversion like that- needlessly prolonging your suffering and recovery time. There is nothing wrong with starting T4 and T3 combination from the start- that's how NDT works!
I started on NDT then added in T3 as I had RT3/DIO3 issue. I sttruggled with that and was still symptomatic so switched to levo (Aristo brand- lactose and mannitol free) and T3 and making huge strides. There was just something about the NDT that my body didn't like. Im not sure what as I really wanted a more natural approach... but my body seems to prefer synthetic. My advice is listen to YOUR body.. not anyone else.. and just try and see what works for you. Many people thrive on NDT, it just didn't work for me.
Do you have an explanation as to why my T3 hasn't changed at all while my TSH and T4 have?
Unless I'm missing something (eg it's established that T3 lags - which seems counterintuitive, but who knows), adding more Levothyroxine on its own won't help.
Unless extremely petite likely to eventually be on at least 100mcg levothyroxine per day
Guidelines on dose by weight suggests Approx 1.6mcg levothyroxine per kilo of your weight per day
Accord don’t make 25mcg tablets so either cut 50mcg in half to get 25mcg or try Mercury Pharma brand for 25mcg
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Aristo (currently 100mcg only) is lactose free and mannitol free.
As explained by SeasideSusie it takes time for your body to settle and recover from being hypo. Please try to not rush and add things that could have an adverse affect on your recovery. I know it’s frustrating but you just cannot speed this up. The admin here really do know what they are talking about, they’ve been doing this for many many years.
Your body will take time to adjust. Optimise vitamins and minerals and add 25mcgs of Levo every couple of months until your FT4 is in the top 75% of the range AND then look at where your FT3 is. ONLY then can you look at conversion issues. Your TSH may be underrange at this stage ( mine is) but that is not important.
Just take the knowledge from admin on here ( not me 🤷♀️).
precisely because I didn't hang about on T4 monotherapy for years, and instead started on combination therapy (NDT) as soon as I was diagnosed, I have managed to start getting well in a short period of time. I was diagnosed last November having been bedbound for over a year... and I am now well on my road to recovery. I did so through research, critical thinking and not just listening to the status quo. Had I done so id probably be wheelchair bound by now, on levo for years and stay that way until I decided to add it T3. Don't waste your precious life and health by 'taking things slowly' when you CAN fast track thinks by being smart- which you clearly are- and not hanging about
Bless you and thank you. Well done for getting on it so quickly.... the collateral damage of this disease and the concomitant issues is huge so not hanging about is imperative to get well as quickly as you can. Obviously it can still take time but I see no point in prolonging the agony when there are solutions x
These solutions you are waxing lyrical about can cause a whole host of problems of their own. I think that if it’s worked for you then you have been lucky and hit the treatment that is right for you. But many of us are not like that and adding T3 or switching to NDT is not a magic bullet but comes with horrible anxiety and other symptoms.
All thyroid treatments should be taken slowly and monitored carefully. Not hung-ho! Like a bill in a China shop. To tell a new patient, on her starter dose, to add in T3 or NDT at this stage is quite poor advice. You are almost the only one advocating such speed too. That should ring a warning bell. There is nothing wrong in taking time when working out a lifetime medication.
Fancypants, I don’t think it’s fair to suggest she is waxing lyrical, she’s quite open that NDT didn’t help her. OP asks if she has a conversion issue and it does look like she has one as her T3 hasn’t moved a dot on 50mcg T4, and was very poor even with a high TSH. I think Lucy, and others, is only making the point that waiting around for more levo to further prove the point that OP doesn’t convert well might be wasted time.
If people have negative responses to T3 being added when their FT3 is low then this is usually due to an issue such as cortisol or iron. T3 gets a lot of blame, but it’s the environment it’s going into that’s usually at the root. I wish I had gotten a grip on that years ago…
and... conversion issues can be looked at and should be looked at early on. They will give you a clear picture and help you to quickly and effectively tackle the situation
Conversion rate is not determined by the amount of T4 in the system- it is determined by many other things. So looking at it early on will enable you know whether you will be someone that definitely needs to add T3 to their treatment to be well. Therefore determining this early on will help avoid months/ years of needless suffering on T4 monotherapy. Quite simple really
Languishing in a retrogressive groove of illness due to poor conversion - which could easily be rectified by addition of T3- seems quite simply insane. You do not need a research paper to understand that.
this is from that article . Please see last sentence. It doesn’t say “ you can tell in 6 weeks of T4 treatment that conversion is poor”. I’m NOT saying that the OP has or doesn’t have conversion issues. Only that he/she should give more time on T4 before changing treatments.
But this is exactly what OP has done… She’s taken levothyroxine for 6 weeks (recommended time is 6-8 weeks before assessing bloods, something this forum endorses) and it shows she hasn’t improved at all. I don’t know what more proof we could want…
If the OP only has 39% in range FT4 who is to say that further treatment with T4 won’t improve both FT4 and FT3. Is it not worth trying at such an early stage 🤷♀️. Meanwhile other things can be addressed ( saliva cortisol, diet, vitamins etc).
I think because conversion is set by genetics to a large degree, cortisol, nutritional co-factors and lifestyle issues such as calorie restriction and illness, it isn’t going to be altered by adding in more levo. She can add more levo - I am in favour of her doing so - but I can also appreciate that she will likely need T3 because she looks like a bad converter. No extra levo will change that.
Thyroid and conversion and all the rest are not in direct 1 to 1 relations - make a change, see the effect. I'm sure diogenes will cover this is his new book, but these feedback loops need time.
At 6 weeks, the body has built up only about 98% of the total dose (based on a half life of 7 days). That means the full dose of levo isn't even circulating, and with zero time to even stabilize on a dose and allow the feedback loops to adapt.
For someone already on thyroid meds increasing in small amounts of max 25mcg, 6 weeks is the minimum and often sufficient. But for someone just starting out, and on a large change - 50 mcg, I would wait. And it's easier to get FT4 at the right spot and then add T3. Rather than trying to juggle 2 variables at once. Plus not to mention you need time to sort out any vitamin/mineral/cortisol issues, which makes it a lot harder to tolerate T3.
I don’t dispute anything that you’re saying… I just don’t think that this has any baring on the fact that OP is a poor converter, which was her original question.
At 98% and after 6 week, a time you admit is sufficient, you’d hope for at least some FT3 improvement, no? She’s not moved a single digit.
Her conversion when both on and off thyroid meds is very poor, even when her TSH was out of range and therefore her system was likely making as much as it could. Paul Robinson has a good article about it, I will find it.
OP seems like a smart cookie anyway, she’s looking into combo treatment already with a thyroid UK list practitioner 🙂 personally, having been ill for 19 years, I’m not up for encouraging anyone to wait to look at combo therapy any longer with a conversion like this.
My own general philosophy is that euthyroid people don’t live for conversion, so why should we? I would always recommend people look into combo from the outset.
I guess we have to agree to disagree. Sure her conversion is poor at the moment but we have no idea what it will be once her system reaches homeostatis on optimal T4. It could be even worse than any of us think. Anyway I've already said my main points so I'll bow out now. Regards.
From what I've read, there are a number of factors that can influence the conversion rate such as low cortisol or certain genetic polymorphisms that interfere with the manufacture of enzymes involved in the conversion process.
I mean why wouldn’t you look at conversion early on? It’s just common sense in predicting how well you would respond to a treatment. Taking more Levo doesn’t always translate to a high FT3. If you have the DIO2 mutation even good conversion on paper doesn’t equal good t3 at cellular levels.
Well you can but if you’ve only been on a starter dose of Levo for 6 weeks why would you waste time/money/ energy on testing when you haven’t tried just upping your dose first. To me that doesn’t make sense but I suppose we are all different 🤷♀️
I think what some are trying to say is that taking more levo is not going to change the fact OP is a poor converter. Her question is “am I a poor converter” and the answer quite clearly is yes.
Conversion is set by genetics to a large degree, cortisol, nutritional co-factors and lifestyle issues such as calorie restriction and illness. It isn’t going to be altered by adding in more levo.
whatever you decide to do is up to you🤷♀️we are all different. However I’ve been on this forum for 3 years reading every day about people’s struggles,
One thing I have learnt is that progress really should be and is slow. I started on 25mcgs if Levo and slowly upped my dose over 19 months and worked on my vitamins and minerals. I did fingerprick blood tests and gradually upped my FT4 &FT3. My conversion always seemed good but then in January I got sick and tired of feeling sick and tired. I can’t afford private endos or expensive NDT/T3. I had the opportunity to use T3 for a private (cheap) Greek source and have added a tiny amount to my 125mcgs of T4.
What I’m trying to say is what ever you decide please don’t rush . You could miss your sweet spot,
I think slightly proving the point in that you mention your conversion always seemed OK...but still not feeling well after 2 years on monotherapy. I'm sorry it's been hard for you to acces private options and T3 - that's a pain, and it's not how it should be, and hopefully one day everyone can have all options in front of them without having to feel ill for so long!
My point was that my conversion was ok until Jan/ Feb when it looked worse. Perhaps I didn’t explain myself well enough. As the OP has FT4 at 39% some more T4 could improve that and the FT3 could rise with it. 🤷♀️. If I could have been symptom free on Levo only I’d be jumping for joy 😀
As you have only been on Levo for 6 weeks it's extremely early days to be deciding anything about conversion and whether levo monotherapy suits you. I completely understand the need to feel well as soon as possible, however getting your replacement thyroid hormone dose right is not something to be rushed. In fact those that do try and rush end up arriving at their goal far slower than those who took their time.
Your body has an awful lot of healing to be done which isn't going to happen in weeks. It will be many months of getting vitamins to optimal, trying dietary changes and allowing time for your body to heal.
Your FT4 may yet drop on the next dose increase or two, it's something you just cannot predict.
Testing after 6 weeks is a relatively short time frame and changes in results can happen 10 or 12 weeks after a dose change even.
Armour NDT is very expensive and there are relatively few Endo's or private doctors who are happy to prescribe it. It's all but impossible to get prescribed on the NHS now.
Have you tested your vitamin levels and begun supplementing low levels?
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
one thing that has not been mentioned here so far . and it is purely pragmatic .
The minute you start adding T3 (or using NDT) there is likely to be a significant drop in TSH . This will usually put the patient at odd's with the GP who is prescribing their levo , and can lead to difficulties in all sorts of areas .
The prescribed dose of levo is often lowered due to the low TSH.
if there are any remaining symptoms or other health issues , all those symptoms will usually be blamed on alleged 'overmedication ' ( due to the low TSH)
while i agree that there is no point prolonging the agony if you are sure Levo doesn't work well enough on it's own .. it seems a shame to miss the chance to even find out if you actually feel ok on a full dose of levo .
perfect conversion isn't the point .. it's not about numbers .,, it's about whether you feel ok.
in an ideal world we'd all get to have a little bit of T3 with our levo from the word go .. and we'd all get to deal with Doctors and hospital consultants who didn't freak out and blame everything else that goes wrong with us on a slightly below range TSH... but it's not an idea world.
and if it turn out feeling ok is possible on just levo , then it makes the rest of your dealings with the medical profession a heck of a lot less stressful .
so personally , i wouldn't wait forever .. but i would give it longer than 6 weeks and i would try higher doses than 50mcg before writing off 'levo only' as a possibility .
Edited to add the following thought: Schilddruse
Regarding your question ... is it plausible or logical that your fT3 levels could increase from this point by just increasing your levo dose ?
So ..... how about this for a theory .
You need to bear in mind that when you FIRST add levo (eg your 50cg dose)......
....... it makes TSH go down ......
....... so you loose the T3 'boost' you had (from high TSH causing your thyroid to produce a higher ratio of 'ready made' T3 than usual).
....... so the INITIAL 50mcg dose of levo is unlikely to increase T3 level from what it was pre-levo, because lowering the TSH has actually reduced the 'ready made' T3 production a little .........
it is for this reason i think it is reasonable to wait and see if further Levo increases might increase T3 level FROM THIS POINT ON ,..... because if you include the loss of that 'ready made' T3 in this equation and the fT3 appears the same on 50mcg levo , then that means the fT3 did go up in response to your T4 rising from 12 to 16 on 50mcg levo .
Starting 50mcg levo has in effect made T3 go down AND up .. hence it looks the same) .
but the next levo increase , (when there is no further loss of 'ready made' T3 ),....... as T4 rises further you may THEN see the rise in T3 ... (because it isn't hidden by a drop in T3)
Only one way to know if my logic is correct though , and that is to try it .
......... if any of that makes any logical sense to anyone apart from me in the morning , it will be a miracle
p.s when you are not sure if something is sound advice or not . it's always a good idea to look up the profile / posts of the member giving the advice .... see how long they have been on thyroid hormone replacement , what issues they have come across so far themselves etc .
relatively new patients can seem very confident in their advice , even evangelical , but the forum has been here over a decade and those with longer experience are likely to have a much better understanding of the potential pitfalls , having seem multiple members fall into them.
OP mentions she has thyroid literate, private GP and is also seeing someone from the Thyroid UK list who is very “combo therapy happy.”
It is also worth noting that it is possible to have thyroid disease and not be on this forum. “Evangelical new members” could easily have been living for decades with thyroid disease, but simply prioritized other forums over this one or just didn’t know this place existed.
and actually, (outside of the admins) time spent on this forum usually correlates with being ill (it does for me)… otherwise we’d surely be off the forum living our euthyroid lives. So time served is possibly not always that much of testament.
If you add T3 in too soon you will never get levothyroxine dose increased high enough because as soon as you add any T3 then TSH will drop to almost zero and it becomes an endless battle not to get levothyroxine reduced/stop
First 6-12 months should be spent getting levothyroxine dose slowly increased up to full replacement dose (usually around 1.6mcg per kilo of your weight) ……and at same time work on improving vitamin levels and addressing food intolerances and allowing cortisol levels to recover
We see many, many members arrive with terrible conversion rates but by increasing dose levothyroxine and getting vitamin levels optimal and allowing cortisol levels to recover naturally with optimal Ft4, frequently conversion can dramatically improve
Slowly, slowly wins the race
Nothing happens quickly in getting endocrine system to rebalance
I don’t think I can keep reaching this as it’s so long, but I just wish to share to not get stuck on the numbers too much. For example, some people feel great with low FT3. We are all different. Go with how you feel weighing the risks and benefits.
There are so many variables involved, but one that makes sense the most is improving your vitamin levels to optimum. You need these in order for good thyroid function (and maybe conversion).
It also makes sense to give it time. I’ve had mine retested every 6 weeks so far, this was based on symptoms too. If could tolerate a longer hold I would (up 8-12) weeks, as the body does need town with the hormones. Remember that thyroid affects every cell in your body, and with treatment it is slowly waking up. Waking it up with a startle May do it more harm than good (I started on 100mcg but had to drop as I began to feel too ill), especially if you have been undiagnosed hypo for a long time.
Patience is your friend here. Remember many people do just fine on Levo monotherepy. You won’t find such people on such forums.
This discussion has become muddled and confusing for anyone else to follow, so it is being closed to further comments.
Schilddruse, hopefully you have gathered enough information now from this discussion to help you decide your next course of action. But if not, please feel free to start a new post.
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