hope everyone is in good health! Can any one please PM me details of a kind and sympathetic endo in birmingham who understands low cortisol levels and the impact it can have in you.. or if any one has tips for getting levels back to normal as I've put on a stone in a mine have a founder face, hair has all fallen out and I'm aching all day everyday.. much appreciated.. x
Poonam
Poonam1,
Sounds as though you may be undermedicated. Can you post recent thyroid results and ranges? If you have any results and ranges for ferritin, vitamin D, B12 and folate please also post them.
Email louise.roberts@thyroiduk.org for a list of member recommended endocrinologists.
If members can recommend anyone they will send you a private message as feedback can't be posted on the forum. To read a private message: support.healthunlocked.com/...
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Thanks for the reply clutter I have had mmy.bloods done but in waiting for the results to he posted to me. I have been told by my endo that I have a supressed tsh and low cortisol. My endo is in Yorkshire which takes 3 hours to get to when I have appointment, which makes it an ordeal. (He was a private endo that was recommended to me). A sympathetic Dr who is willing to do tests but I have to go ther in order to have them done, butni live in birmingham.
Sorry for the ling reply and thanks again x
Poonam1,
Suppressed TSH simply means your TSH is low, <0.1 and doesn't guarantee FT4 and FT3 are good. I had TSH <0.01 but FT3 was below range and I felt dreadful.
Post the results and ranges in a new question when you receive them and members will advise whether you are optimally dosed.
You can order your own thyroid tests to be done at home via thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.
Thanks Clutter
I've seen a while load of endo's that cut back on you're dosage when they find your tsh is suppressed. And thats always been case.. this community and you have been fantastic.. but if I were to self help and self medicate I never have the support from my GP who aggressively states that they are they specialists.. I've seen 4 endo's privately and they do the same and all say that NDT is not a licenced medication so it's all unsupported. I've been so frightened of planning a family and now I'm 43 and probably don't have a chance to be a mum now.. how have you coped clutter and do you feel better now? X
Poonam
Poonam1,
What use is GP or endo support if they are not helping you feel well? Better to self medicate and feel well than to go along with their support which isn't working.
Suppressed TSH doesn't mean you are overmedicated as long as FT3 remains within range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP or endo.
NDT isn't licensed for UK use so you won't get it prescribed on the NHS but it is available online without prescription and you can order your own thyroid blood tests to monitor your levels and guide dose.
I listened to my endo for 15 months but he was dismissive that Levothyroxine was the cause of my symptoms and I became progressively more unwell until I was 90% bedbound and suicidal. I spent 6 months self medicating and fixed myself. Endo agreed my health was massively improved and prescribed Levothyroxine and T3 at the doses I had been self medicating.
I'm seeing a different endo (same clinic) and although my TSH is to be kept suppressed to reduce chances of cancer recurrence she wants it less suppressed. I had three dose reductions which did not budge my TSH but FT4 and FT3 dropped and I felt less well so I've subsequently refused further dose reductions. I made it clear I would buy my own meds and self medicate if she reduced my prescription.
I feel reasonably well most of the time but I don't have the stamina or energy I had before I had Hashimoto's and thyCa and I have to pace myself.
I can relate with what what you've been through Clutter, minus the cancer and I'm ever so glad that your feeling better..Thank you for your encouraging words I AM WILLING to try and self medicate but don't know where to start. I have naturethroid in 1 grain strength and I am in 125 of levo, any thoughts in where to start please?
I'll also post my results when I get them.
Thank you
Poonam x
Poonam1,
It would be better to wait until you have your results and ranges before switching to NDT. If FT3 is low it will be helpful to have some T3 from NDT but if FT3 is good you don't want too much T3 and might want to try a combination of Levothyroxine and NDT.
125mcg Levothyroxine is equivalent to 2 grains of NDT. It will probably be better to reduce Levothyroxine to 50mcg and introduce 1 grain NDT split into 2 divided doses morning and bedtime. A couple of weeks later stop NDT and increase NDT to 2 grains split into 2 divided doses.
Hi Clutter
I hope you're well?
I've just got my blood results tidsy from the 16th august, endo didn't care go post me copies, he said he did but I don't know. Anyhoo.. I have to tell you that I was asked to stop taking armour on the same day as these test were done. My endo is trying to normalize me in t4 levo only and I'm taking 100mcg of levo now, which I'm worried about because I'm so big right now and it only took 2 months for me to put on a stone in weight. He feels that I do not make the right choices with food, so I'm eating less than I was before and have a very hard time doing any excersise with painful and water retained joints!
Tsh <0.02 (0.27 - 4.20)
Tpo antibodies 204 (0.34)
Free t4 27.2 (11.0 - 26.0)
Free t3 6.4 (3.1 - 6.8)
Cortisol 144 nmol (no ranges given)
Pth 2.7 (1.6 - 6.9)
Lh 2.2 iu/L (no ranges given)
Fsh 2.5 (no ranges given)
Testosterone 0.8 (0 - 1.8)
I hope this is useful. Thank you for you're help x
Poonam
How much Armour were you taking, Poonam1?
TSH was suppressed, FT4 mildly over range and FT3 in the upper third of range. I don't know why your endo would want to switch you from Armour to Levothyroxine other than his/her bias against NDT.
PTH and Testosterone are within range. I can't comment on cortisol, LH and FSH.
Hi Clutter
Thanks for replying.
I was taking 1 grain plus 100 mcg of levo. X
Poonam1,
But now you're just taking 100mcg Levothyroxine? It's hard to see how you can't be undermedicated if 1 grain Armour has been cut out.
Yes and I feel it. But he made me believe it’s to do with cortisol! I believe he’s not comfortable working with armour or any other natural thyroid, I feel worse everyday and I’m not sure what to do. Sorry to of load on you but I’m just falling asleep every putting on 2pounds a week roughly and my hair loss is really getting me down, even my eye browns and lashes are thinning now ! So upset
Poonam x
It was prescribed by the endo after I begged him to work with me. Honestly it made a tiny difference in body temp,as in raising it,but that’s it. The plan was just to have it for two weeks or just a little longer then to be weaned off. I’m scared to self medicate , I’m just scared with all the bone loss explanations with taking too much t3
X
Poonam1,
You weren't overmedicated on 100mcg + 1 grain NDT so it's hard to see how you are optimall dosed on 100mcg only.
No one is suggesting you take too much T3. As long as you keep FT3 in range you won't be taking too much.
If you don't want to selfmedicate ask your endo whether s/he will increase Levothyroxine dose or prescribe some T3.
Hi clutter
He did prescribe t3 20 mg and it didn't do anything at all.. is there any thing you may suggest I'm willing to self medicate, hopefully endo won't hit the roof. I just want to feel better loose weight and stop hair from falling out. My crow us so so thin x
Poonam1,
If it was prescribed instead of NDT you should be taking the 20mcg with 100mcg Levothyroxine. Most people split into 2 x 10mcg doses and take the first 10mcg with Levothyroxine and the second 10mcg at bedtime.
Thanks Clutter
You have invaluable knowledge a d really appreciate you answer in my questions. I have done that j the past and willing to give it a go again.. I'll be seeing my endo.on Dec and will ask him He s prepared to give it another go. Other wise k have some wp thyroid and np thyroid as back up.
Thank you so much for being so lovely x
That s fine, I'll wait . Thank you for you're help x
Hi, I can tell you that I have not found a helpful endo in the Birmingham area. I've been sent to see endo's (even Professors of Endocrinology) in Brum area since 2006. One took me off T3 and back onto T4 which caused me untold misery, the very best one left & went to Oxford to research diabetes - what a waste. The latest I've seen on NHS does not have a clue and I'm now seeking alternatives. ie homeopathy. Given up - they have wrecked my life. Good luck. I suggest the best is to self medicate
Hi Marigold 22
Thank you for your message. I agree with you, I m at such a loose end with my health ( as most of us are on this site sadly) but there is hope and this blog actually empowers us all. I cant believe that people have so much power being endochrinologists but won't have the empathetic attitude that needs to come with it. Very insensitive they are people with control issues..sorry it's just the way I feel. The other day I refused to attend my appointment with my allocated endo hes very unhelpful and unwilling to deal with my symptoms, but admits that i am showing signs and aymptoms.of hypothyroid ism but wont treat further, I just couldn't do it.. I had to cancel then felt the need to ask if I can be take off that particular Patient list. Apparently I need to email them to say why I don't want to be seen by them?
Im confused.. I wish you all the best and hope you feel better soon.
Poonam x
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