Hi, I am new here. I have Hashimoto hypothyroidism since age of 13 in 1983 and taking Levothyroxine.
I live in the UK and have been very ill since last Autumn, and really deteriorating since January 2015 with nausea, vomitting, extreme fatique, dizziness, weight loss, pigmentation of gums, lips. GPs thought all was caused by my Hashimoto so kept increasing my Levothyroxine from 150 a day to 175. In May GP found from blood tests I had severe Vitamin D deficiency,so prescribed me vitamin D supplements, but I was not improving,but further deteriorating. I nearly died travelling to Czech Republic visit my Mum. My Mum took me to hospital there and I was diagnosed with Addison's Disease on 4th August and began treatment with 20mg Hydrocortisone a day. I improved only slightly but suffered still with extreme fatique and nausea.I arranged translation of hospital report to English and sent to my UK GP.GP read report and talked to hospital Endocrinology who told refer me urgently to them and continue taking Hydrocortisone. GP sent urgent referral to Endocrinology on 7th August. But Endocrinologist was only able to see me on 8th September, assessed me externally, told me continue 20mg Hydrocortisone and start 0.1mg Fludrocortisone daily,keep taking 150 and 175 Levothyroxine daily go for Synacthen test and see him in November. I asked about links between my Hashimoto and Addison's and whether any changes to Levothyroxine dose needs to be dobe but he didnt want to consider that. I told him about my concern about need to stop my steroids before Synacthen as I feel so ill and Endocrinologist told me not to worry. Only improvement since starting Fludrocortisone is now that I don't have nausea any more. But I am not improving and twice in last 2 weeks I was in onset on Addisonian Crisis (with vomitting and signs of low cortisol) and I managed to stop development of full blown crisis by dissolving Buccal Prochlorprerazine on my gum and by dissolving 20mg Hydrocortisone under my tongue as I do not have emergency injection yet as apparently in the UK I don't have yet Addisons Diagnosis. However UK Endocrinologist concluded on 8th September I have Primary Hypoadrenalism possibly because autoimmune Addison's. Now I am supposed to go for Synacthen test on 8th October and stop my medication on the morning of the test. I wrote letter to hospital to express my.concerns and Endocrinology nurse phone me back telling me not to worry and come.
I am concerned that my hight dose of Levothyroxine is affecting metabolism and absorption of my Hydrocortisone and Fludrocortisone and have done some research about it and I think there is a link for me and I am not really improving on medication for Addison's as my Levothyroxine speeds up my metabolism and I use Steroids too fast and 20mg a day is not enough.
Does anyone have similar diagnosis and experience of this?
I am trying to decrease my Levothyroxine and to see whether that would help to have greater benefit from steroids for treating my Addison's. I noticed in past 2 months 2 months that when I ocassionslly forgot to take my Levothyroxine and took only steroids, I was feelings much better.
Jana
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Jana, shouldn't the hydrocortisone dose be higher? I.e. 20 mg in the a.m. and 10 mg in the p.m.? You don't say anything about dosing schedule, but my understanding is it's twice a day.
Hi, yes,I think my Hydrocortisone should be higher as I am not recovered from severe Pre-diagnosis illness,but Endocrinologist did not want to change anything. I asked me GP to refer me for second opinion to different Endocrinologist from same NHS department who is specialist for Thyroid problems and Addison's.
And yes, timing and absorption of Hydrocortisone is a big issue for me. I seem to do slightly better on 4:4 schedule on advice UK Addison's Self-Help Group, but Endicrinologist told me go back on 3 times a day schedule but that makes me worse
I also do better if I take 2.5mg Hydrocortisone at 3.30 am to imititate natural circadial system in the body. I read that works for some Addison's patients. But I think my Hydrocortisone should be higher until I get stabilized. I just want to see different Endocrinologist who will take all my conditions in account. I have also Lactose, Gluten and Soya intolerance.
Can you do telephone consult with the endocrinologist in Czech republic and get medication through that person?
You are correct though, in that adrenal issues need to be addressed ahead of going full steam ahead with thyroid hormone replacement. The body can't take the metabolic increase if cortisol is low.
Not giving advice here, just making a suggestion: I don't know in what form the 175 mcg thyroxine is, if it's one tablet or more than one tablet. Don't not take any, but if you feel better on a reduced dose, if you can manage to do it, then try. Is it possible to take 125 mcg? The thing is, it takes time for the blood levels to go down since the half life is so long. Skipping 4 days worth and then taking 125 mcg per day might put you at a steady state.
In Canada, hydrocortisone is considered in the same category as insulin: you do not have to have a prescription to get emergency top up. If you have a Medic Alert bracelet that states you have Addison's disease and show it to a pharmacist, tell them you don't have your hydrocortisone with you, they'll give you extra tablets to tide you over.
As soon as you get your 'official diagnosis', get a Medic Alert bracelet. if the information from the Czech republic doctor is enough for you to have Addison's diagnosis from that country, then you can also register for a Medic Alert bracelet. This is a worldwide charity, so it's not a country specific organization. Here's the UK website: medicalert.org.uk/new-to-me...
Hi, thank you. Yes,I am experimenting now with taking lower Levothyroxine for few days and I am contacting my GP about my concerns and I will try to email directly leading Endocrinologist from our local NHS hospital (who is specialist for Thyroid and Addison's) and to whom my GP refered me for second opinion. From my previous experience,when I brought diagnosis and reports from Czech Republic to the UK, UK NHS always insisted on running their own tests, so I think the best think is to try to push through to be assessed by different Endocrinologist and to collect,review enough evidence to show I need help urgently and cannot wait many more months.
My GP is usually supportive and listening. But thats after critical case review as GP practice did quite few mistakes in mis treating me. Now I need to explain them kindly (based on journal article evidence) that GP by increasing my Levothyroxine since January, while missing I had ALL the symptoms of Addisons, GP were actually pushing me on the edge of Addisonian Crisis...
I just want to talk to Endocrinologist who will take seriously in account my complex condition.
Hi, thank you. I have found this article yesterday and read abstract,but cannot access full text not even via my husband's university postgraduate course account. I think it would be helpful read for me. My husband found few other articles with same topic, so that's why I became concerned about how my conditiins got mistreated.
I wAs able to access and read the full article. Thank you so much! I will pass the article to my GP. Hopefully after missing my Addison's symptoms will watch out more for similar presentation if any other patient with hypothyroidism comes to them with Addisonian crisis presentation. They sent me to ENT to explore my dizziness and vertigo in July when I was in Addisonian crisis.
Wishing you well in your endeavours to get proper treatment.
By chance, minutes after reading your post, I came across this abstract. Probably of zero value other than passing interest.
J Ayub Med Coll Abbottabad. 2015 Apr-Jun;27(2):467-9.
SCHMIDT'S SYNDROME IN A 32 YEARS OLD FEMALE.
Pasha W, Ali W, Khatak AL, Ahmad N, Idrees M, Nayyer ZA.
Abstract
In polyglandular autoimmune (PGA) syndromes, there is immune dysfunction of two or more endocrine glands. Immunity mediated disorders of non-endocrine organs may also be seen. These syndromes are of two main types: type I and type II. We are reporting this case of a 32 years old lady who presented initially with hypothyroidism for many years and received thyroid replacement therapy. After that she was married and had children. After an interval of about seven years of the initial diagnosis of hypothyroidism, she was hospitalized in first trimester of pregnancy for severe vertigo, syncopal episodes and hypotension. She responded well to intravenous fluids and steroids. Further endocrine related, investigations revealed Addison's disease and the above episode were retrospectively diagnosed as Addisonian crisis. Thus the patient was diagnosed as Schmidt's Syndrome (Autoimmune polyendocrine syndrome type 2) since 2009.
That´s very helpful, thank you! Yes, i have read some other journal articles about Schmidt's Syndrome, now APS 2, it's very relevant to my condition. Now I "just" need to be stubborn enough to fight through to get to see Endocrinologist who is actually specialised in assessment and treatment of polyglsndular autoimunne syndromes.
I have had addisons disease for 14 years and hypothyroidism for 4 months.i am taking 20mg of hydrocortisone 10mg in the morning 5mg at dinner and 5mg at 5pm.0.1 fludro in the morning. Regarding your addisons have you had a day curve analysis?where they check your cortisol levels through the whole day.
Hi yes, i had Day Curve on 30/10. I managed to get to see different,more helpful Endocrinologist who adjusted my medication and after that i began to improve. I am going now for asssessment for Thyroid Eye Disease, as I have double vision all the time. I have been checked for Myasthenia Gravis as Endocrinologist and neurologist were concerned about me having some symptoms of MG but it looks i do not have MG.i managed to return to work after 5 months of absence and also got myself new job, starting in January.
My Endocrinologist is open for me try Plenadren, slow release Hydrocortisone because I need to be taking my usual Hydrocortisone 5 times a day to keep going and i need 3am Hydrocortisone dose 5mg to be able get out of bed at 7am. I take 30mg Hydrocortisone a day, 0.2 mg Fludrocortisone and 150 Levothyroxine. But as my thyroid not balanced right now Endocrinologist increased my Levothyroxine and wants to see if my thyroid function results improve before starting Plenadren. Jana
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not even via my husband's university postgraduate course account. I think it would be helpful read for me. My husband found few other articles with same topic, so that's why I became concerned about how my conditiins got mistreated.
Hashimoto
skin itchiness, hives & Hashimoto thyroid 
Hashimoto 
