Long running saga which sorry for expletives in advance is really getting on my TITS now.
You know that feeling when you begin to see the light at the end of the tunnel and some bastard pinches the bulb or forgets to put money in the meter.
So I haven' felt 100% for years but you know how women sort everyone else out first and just get on with it. Probably been undermedicated for years, possible problem with conversion T4 to T3. Weight has increased , used to be ok, size 14 or 12 if I left his home baked bread alone for a while. The day I came out of hospital after last child just over 12 years ago I was 13 st (83kg) breast fed her till about 18 20 months then 12st 4, (79kg).
Now I like my food , I like a drink, G&T ice and slice poison of choice , but I am reasonably active, careful about food intake. Not an Angel, but not a glutton. Current weight now 16 st 3 (104 kg).
So apparently when put on Venlafaxine( anti depressant) in 2018 no one mentioned it could interfere or impede bodies ability to process/control blood glucose, that and under medicated on Levo has really took it's toll. Apparently by the early May of 2019 my records show "impaired glucose regulation", Looking on my GP app HBA1c 46 , not mentioned to me. Records on GP app say for r/w discussion with Dawn, never happened no record of review. So December they announced I was now diabetic , HBA1c 49. <41.00IFCCmmol/mol.
Sent to see practice nurse in January walked in and she told me I was starting on Metformin , I told her to go forth and multiply,
I have done the diabetic eye screening, 24hr BP monitoring, agreed to referral to Loss programme,(dieticians) only waited since March, no sign of appointment.
They told me they would start my on hypertensives, again declined the offer. Noted as stage 1 hypertension . Also wanted to start me on statins , also declined.
Rang me earlier to ask me to go in Tuesday morning to discuss diabetes and last lot of bloods.. With the person who forgot to discuss in 2019. Person who took 3 weeks to ring me to tell me I was Vit D deficient, after initially telling me everything was fine.
I know when I go in I am going to have a fight on my hands, I need to educate them. I have tried really hard to loose weight over last 12 months to no avail, trying to get through to them that 1, if I wasn't undermedicated I wouldn't be so heavy 2, being Vit D deficient, folate deficient, magnesium deficient, B12 deficient , is the problem. My metabolism is F****d, BP is because it is F****d, type 2 because of these, Lipids up because of all of this, I could go on , more
Need to get me head straight, evidence printed and go in and kick arse. I am supposed to be studying to try and get back into uni and all this is wrecking my head. So sorry for the thesis, Links to relevant papers/articles to reinforce my argument gratefully accepted
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Polo22
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iron July 21 9.9 umol/L 5.8-34.5, ferritin not done , Blue Horizon 9th May 22 ferritin 112 13-150 ug/L NHS results 23rd May 22 iron 25 umol/L 5.8-34.5, Ferritin 117 ug/L 13- 150. , this is with self medicating/supplementing. Magnesium was 0.82 mmol, no reference range NHS test early 2021, Blue Horizon May 22 0.9 , 0.7- 1.0, . GP have just text me to say they received the missing Vit D result from 23rd May it is now 47 nmol/L had been 10
Oh ffs could they be more incompetent?? I'm SO sorry!!
What type of articles are you looking for specifically? How un/under-treated hypothyroid can lead to diabetes, or all of the above, or...?
I don't have much time today but wanted to drop a couple of quick pointers. First, If you're B12D then HbA1c may be unreliable. A1c is based on red blood cells, which can get distorted in b12d. I would strongly suggest doing home testing to see what blood sugars are doing in reality. I really like the bloodsugar101 site. How to measure your blood glucose (BG) before and after meals and how to reduce BG if it's going high. bloodsugar101.com/how-to-lo... You would need to purchase or borrow a blood glucose meter. And if in fact diabetic or even pre-diabetic, periodically measuring at home is good practice IMO.
Second, depending on the organization, an a1c may be classed as right on the border of prediabetes and diabetes. Assuming this a1c is reliable, it may not be too late to reverse some of the damage (see the site above). And metformin is not the end of the world (I take it), though I realize the real problem is their incompetence and lack of communication and the pileup of yet more issues!!
not at GP's till Tuesday so anything to do with co factors and how deficiencies affect function. My ADHD brain has loads of stuff filed, unfortunately the filing system is somewhat of a mystery and been having some major sensory overload melt downs, so thank you for being here
I looked through my papers and have a couple that may or may not help. I won't be near a computer the next few days, just my phone, but if I do run into anything else, I will post it.
You should also look through diogenes's recent posts to see recent papers talking about the benefits of adding T3 to T4.
van Tienhoven-Wind LJ, Dullaart RP. Low-normal thyroid function and novel cardiometabolic biomarkers. Nutrients. 2015;7(2):1352-1377. Published 2015 Feb 16. doi:10.3390/nu7021352 ncbi.nlm.nih.gov/pmc/articl... Talks about cholesterol, diabetes/hyperglycemia in "low normal thyroid" people which I would suggest may apply equally well to undertreated hypo people. "Collectively, these data support the concept that low-normal thyroid function may adversely affect several processes which conceivably contribute to the pathogenesis of atherosclerotic cardiovascular disease, beyond effects on conventional lipoprotein measures."
Reverter JL, Holgado S, Alonso N, Salinas I, Granada ML, Sanmartí A. Lack of deleterious effect on bone mineral density of long-term thyroxine suppressive therapy for differentiated thyroid carcinoma. Endocr Relat Cancer. 2005 Dec;12(4):973-81. erc.bioscientifica.com/view..."In conclusion, long-term suppressive LT4 treatment does not appear to affect skeletal integrity in women with differentiated thyroid carcinoma."
Oh Polo22, I could have written so much of that. Even the weights at various life stages.
I see you self inject B12. Which makes me wonder—if you really don’t get anywhere with your frankly useless surgery, would you consider self medicating thyroid hormones? Maybe by purchasing some additional levothyroxine/liothyronine? I’m not necessarily suggesting going it entirely alone, more a bit of “take what they provide but add to it using private stash”. Wouldn’t usually recommend this as a course of action but your options are getting pretty narrow aren’t they.
It’s a big step but I suspect a fairly staggering number of us here do or have done that at various points. Sigh.
Not least because our GPs are generally not receptive to attempts to educate.
You are being far to logical for the medical profession.
1. You looked at your results - and understood them. This is not allowed.
2. You could see what was making you ill - they ignore this as it is their job, not yours.
3. You knew the side effects of certain drugs. This is also not allowed - they know best.
4. You challenged their knowledge. I suggest you grow a forelock and learn how to tug it.
5. This is the worst fault - you think they care. They dont. They just want the money. They just want to lord it over you, tell you what they think and to hell with your health.
Woman - know your place!
There, I hope that raised a smile. Like many of us here, we learn about our illness, how it affects us personally, and then go our own way. As Jazzw said, think about adding T3 - it really changed my life. Sending a hug.
So after a bit of 'discussion' , GP agreed to increase back to 150mcg 3 weeks ago.
Looking at this history , i think your best approach at this next appointment is not to waste your breath (or your temper) arguing about evidence for statins cholesterol metformin diabetes etc .
personally i would just say . " .......before considering any of these options , i would like to wait until i've been back in 150mcg for a few months .
My TSH is clearly showing i have been undermedicated for a while , so i want to sort that out first , as i understand it may help with several other issues ... so can we agree to recheck my thyroid bloods after 2/3/ 6 months ( take your pick ) on 150mcg and then re-asses where we go from there ...... "
think reduction to 125mcg was end of 2017. ref ranges TSH 0.27 - 4.20 mU/L Free T4 12.0 - 22.0 pmol/L.
not sure about last test on 150mcg think it was TSH 0.05, FreeT4 32.3,
all same ref ranges. throughout, T3 result never arrived apparently they don't bother testing as it's useless
🤦♀️🤦♀️🤦♀️only thing I can think but surely it can't be right is they looked at the Free T4 32.3 and thought they should reduce as it was over range, Doesn't make sense , does it?
Maybe they don't do the FreeT3 in case it showed a problem with conversion and then they might have to prescribe something
"only thing I can think but surely it can't be right is they looked at the Free T4 32.3 and thought they should reduce as it was over range, Doesn't make sense , does it?"
Yes it did make sense ....
fT4 was 32.3 [12-22] on 150mcg TSH 0.05.... fT4 was why they insisted on reducing levo, it was a lot over range.
fT4 initially 22. 3 [12-22] on 125mcg (last year) TSH was 0.81 . (so they left it at 125 mcg) fT4 now 19.8 [12-22] on 125mcg , but TSH is now 5.3.
They have decided to increase now based on TSH , but they are hesitant because fT4 is still close to top of range and they fear it will go way over range again on 150mcg like it did last time...(it's quite likely that it will , and if it does they will want to reduce again). GP's basically aren't supposed to continue prescribing same dose when fT4 is so far over range as it goes against their safety guidelines. Realistically they would need some approval from an endocrinologist to cover their back, or they are taking a big risk professionally.
NHS do take fT4 into account if it goes over range , they don't just look at TSH.
If they do want to reduce again, you could ask to try a dose in between 150mcg and 125mcg ~ 137.5 mcg (ie.125 / 150 mcg alternate days) rather than reducing to 125mcg.
Clearly the real issue is that even with all that fT4 you have bugger all fT3.
It would obviously be better if they could give you less Levo and add a bit of T3, but GP's aren't allowed to prescribe that .. you would have to get them to refer you to endocrinology for a trial of combination treatment~ based on your low fT3, and the fact that even with such high fT4 your TSH was still as high as 5
It would be a decision at the lab to not test fT3 . GP's can ask for it , but labs often over ride GP request, Some GP's seem to have more success than others in insisting they want it done anyway by writing a specific reason for the request on the blood form , but in some areas even that doesn't work .
So you need to find a way to get your GP to acknowledge the lack of T3 testing is a problem in your case because you have reason to believe it's very low . The fact that your latest NHS test confirms the Blue Horizon 'high' TSH and fT4 levels are similar may help persuade them that Blue horizon fT3 was also likely to be reasonably accurate.
So you need to get GP to push harder to get an NHS fT3 result for you ... if they say they can't get the request past their lab ,and can't accept a private one , then you could suggest they could refer you to endocrinology to get it done in preparation for seeing endocrinologist about NHS trial of combination therapy.
if you can put papers under their nose that connect low fT3 to you r diabetic issues , that will help. I know nothing at all about diabetes issues , but is this paper recently posted by diogenes any use ? healthunlocked.com/thyroidu... (this-gives-an-indication-as-to-why-t4-monotherapy-does-not-satisfactorily-restore-carbohydrate-response)
It is worth looking down his list of posts on his profile page for anything else that could be useful. healthunlocked.com/user/dio...
Thanks , yes I see what you mean now about FreeT4 , and that being reason for reduction. Worried about possible future reduction's as Actavis has always been the brand that works best for me, and of course they don't make 25mcg tabs. I think in the past they used to tell me to not omit Levo the day of test and now I know that isn't correct. I suppose I could private test few weeks before NHS test to see where I am and if needed maybe halve 50mcg tabs alternate days till NHS , do you think that would work/ be ok? They also used to say no need to fast before test and that it didn't matter if test was 10. ,10.30 or 11 am
if that 32.3 result was taken within about 2-6 hours after taking your 150mcg dose , then yes , it would definitely have been lower if done properly @24 hrs ,..... but it would (probably) still have been quite a bit over range .. the ' peak after ingestion' from 2-6 hrs does certainly make a difference , but not that much of a difference.. (from memory i think it might be in the region of +14% ? )
yes , getting 12.5mcg adjustments with 50mcg tablets can be done by tasking half a 50 every other day.
But you really need to be on a consistent dose for 6 weeks for any accurate blood testing.
P.s
Something you need to at least be aware of, even if you then decide it doesn't concern you .....there are some genuine concerns nowadays about having fT4 over range, and why it's probably best avoided, if possible.
eg. There is some recent research suggesting that some types of cancer cell proliferation is related to having higher levels of T4 (both natural T4 and T4 from levo)
So i wouldn't recommend having over range fT4 unless you have understood this current research and are happy with the '? risk' when you could possibly try 'less levo and a bit of T3' instead .
p.s re the fasting , and 10/10.30/11am for testing . There's really not any reliable evidence that eating breakfast lowers TSH , one study said it did,.... but they tested TSH, then gave them breakfast , and then tested TSH again, and found TSH was lower .... but of course it would have been lower on the second test anyway because by then it was later in the morning ,....
But 'just in case' it does , and for the best consistency from one test to the next ,it's just easiest to stick to the "no breakfast ,no Levo , just water, then test early a.m " rule.
There is some evidence that coffee lowers TSH i think , but i can't remember for certain .
TSH has a circadian rhythm , it is highest in the middle of the night / very early am (ish) ).... and falls gradually to it's lowest every day around 1-3pm (ish) So you would expect TSH to be a little lower at 11am than at 10am , and lower at 10am than 9am. For consistency in interpreting test results , whatever time of day and gap pfrom last dose you choose ,it is best to keep these timings as close as possible for future tests ,
Other wise , if you do one test 3 hours after taking levo at 9am .. you get a higher looking TSH and a higher looking fT4 . And then if you did the next test 10 hrs after levo at 4pm you get a lower looking TSH and a lower looking fT4 ... when in fact nothing has actually changed.
but if your TSH or fT4 results are already close to the limits, then these sort of differences , even though they are not massive , could be enough to make the difference between in range / out of range .... change dose / leave it alone
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