My subclinical hyperthyroidism annd patients discussion forum

Posted , 4 users are following.

This forum is a real help in the word of thyroid diseases for common sufferer like me when there is no clear and effective treatment in modern endocrinologists clinics in short.

Now, my first thanks , regards & appreciations goes to this forum & Linda187. I have been following the Linda187 posts on this forum since 5:9:2017 when my subclinical hyperthyroidism was diagnosed. Having been inspired by Linda187 L'carnitine, methimazole,acetylcarnitine,vitD, vitB12, calcium, omega3 etc treatment protocol, I have started my self treatment after several failure from my endocrinologists those who have suggested to take RAI treatment that I refused.

I have considerable relief in my subclinical hyperthyroidism symptoms but I wanted to put my date wise lab test parameters here on this forum and specially to Linda187 for comments, suggestions and guidance for further improvement in the treatment protocol.

My age 58 Male.

No-1 -- Date 5:9:2017.

T3--- 86.40 (70--204)

T4---8.10 (4.1--11.8)

TSH---0.17 (0.2--5.7)

VitB13-- 240(187--883)

VitD---32.8 (30---100)

Calc---9.5 (8.1---10.4)

TPOab--0.43 (0---5.61)

At this stage 5mg methimazole was prescribed by endo but severe side effects occurred after taking.

No-2---Date-23:9:2017.

Ft3--- 2.51 (2.6----5.6)

Ft4---13.1 (9.0---19.0)

TSH---0.106 (0.35---4.94)

The new endo stopped methimazole.

No-3 Date 23:10:2017.

Ft3---4.02 (3.10----6.80)

Ft4---13.33 (9.0----19.04)

TSH---0.089 (0.270----4.20)

Here no medicine. Endo said to wait.

No-4 Date--8:11:2017.

Ft3---3.08 (2.3---4.20)

Ft4---1.28 (0.89---1.76)

TSH---0.420 (.550---4.780)

Radio active iodine uptake value & scan .

2 hours --20.8% (5---15%)

24 hours 58.8% (15---35%).

Scan shown -- tracer distribution uniform with normal shape but enlarged thyroid with no hot and cold area. Again suggested treatment was RAI.

NO--5 Date - 9:12:2017.

Ft3---3.20 (2.30---4.20)

Ft4---.0.81 (.89---1.7)

TSH---.574 (.055---4.780)

VitB12--587.00 (211---911)

Calc---9.2 (8.8----10.6)

VitD---88.1 (75----250). Here alkaline diet began. Arvedic med (KACHNARGUGLU) began.

No-6 Date--9:1:2018.

Ft3--2.73 (2.3---4.2)

Ft4---.09 (.89---1.79)

TSH--.0188 (.550---4.780). Here arvedic med (kachnarguglu) stopped due to decreased level in all Harmons lab result.

No-7 Date--21:1:2028.

Free carnitine--56.47 (8---100).

AcetyLcarnitine---9.89 (8---150).

Iron------143 (65---175)

Total iron binding capacity--285 (250----425).

Trasfering saturation --5018 (20---50.00).

No-8 Date-10:2:2018.

Ft3---2.71 (2.1---4.4)

Ft4---1.77 (0.8----2.7)

TSH---0.667 (0.55---4.78). Here Linda187 protocol took place as follow :

1) L-carnitine-3000mg/daily

2) Gemcal DS 500mg/daily

3)VitD 1000iu/daily

4)omega3 -900mg/daily.

No-9 Date--6:3:2018.

Ft3---0.267 (0.257---4.43).

Ft4--1.05 (0.932---1.71).

TSh--0.647 (0.270---4.20).

AcetyL-carnitine added to protocol as follow;

1)acetylcarnitine--25omg/daily.

2)L-carnitine--500 mg/daily.

3) GemcalDs--500mg/daily.

4)vitD--1000iu/daily.

5) omega3--900mg/daily.

No1o Date 4:4;2018.

Ft3--- 2.18 (1.69---3.64)

Ft4---10.89 (9.0---19.0)

TSH-'-0.365 (0.35----4.94).

Zink----78.68 (70---120)

Magnesium ---2.1 (1.6---2.6)

VitB6---15.24 (5----30)

Here treatment protocol as follow :

1)L-carnitine --1000mg/Daily.

2) acetycarnitine--500mg/daily

3)vitD--5000iu/daily for 1month

4)GemcalDs --500mg/daily

VitB12(as methylcobalamine)---2500mg/daily for 1month

No-11 Date -10:5:2018.

Ft3---2.81 (1.69---3.64)

Ft4---11.42 (9.0---19.0)

TSH---0.604 (0.36----4.94).

VitD--46.5 (30----100)

VitB12---501 (211---946)

Cal----2.5 (2.05---2.55). Here treatment protocol added with methimazole2.5mg.as

1) methimazole2 --2.5mg/daily.

2)aclcarnitine--500mg/daily

3) L-carnitine--1000mg/daily.

VitD--1000iu/daily.

Omega3----900mg/daily.

No-12 Date 10:6:2018.

Ft3---4.54 (3.95---6.8)

Ft4'---14.9 (12.o---22.0)

TSH---0.28 (0.272----4.2).

Here change in dosage as

1)methimazole--2.5mg/daily.

2)acl carnitine--1000mg/daily.

L-carnitine---1000mg/daily

VitD---1000iu/daily.

Omega3----900mg/daily.

No-13 Date 10:7:2018.

Ft3---- 5.67 (3.95---6.8)

Ft4----11.24😂(12.0----22.0).

TSH---1.122😀 (0.272---4.2)

Here I changed methimazole dosage due to Ft4 came down from lower limit of reference range. Start taking alternate day. As bellow

1)methimazole 2.5mg/alternate day

2)aclcarnitine---1000mg/daily.

3)l-carnitine---1000mg/daily.

VitD----1000mg/daily.

Omega3----900mg/daily.

No-14 Date 11:8:2018.

Ft3-----4.90 (3.95---6.8)

Ft4-----9.99 (7.9----14.4)

TSH----0.603👎 (0.272---4.2)

TPOab---1.11 (less than 5.61or0----5.6)

TGab----1.11 (0.00---4.1)

TRab----1.11 (less than 1 .75 or 0---1

.75).

No-14 lab results are the latest one. I wanted to see my TSHvalue some where between 1&2 mark of reference ranges but I don't known what to do next and whether it is Grave or Hashi?

My request to Linda187 or someone else on forum, is to guide and email me any link of other site or any other natural treatment protocol to improve my condition because I feelvery lethargic in the morning until I get a satisfactory poop but it is not always happening. I think, my hyperthyroidism is caused by gut only if I right. My sleep is not sound. It is interrupted many times at night. I feel energy less some time in the day (occasionally ).

After looking into all above, please comment, guide, suggest and reply.

Thanks each and everyone here on the forum.

0 likes, 12 replies

Report

12 Replies

  • Posted

    I had the RAI and I haven't felt good one day in my life since 2006 when I had it done at U of L hospital in Louisville,  KY The various problems I have had from not having a thyroid have been devasting to the point that I can barely work and am struggling just to keep the right attitude so I can keep trying. I lost the will for a bit and ended up on the 5th floor of the hospital, not my proudest moment. I wish I had know there was other options but it's to late now. I wish yo all the luck and good health

     

    Report Reply
    • Posted

      I am really sorry to know that you got RAI even though no relief that's why I feel myself very lucky to find out this forum and opinions and understanding of experienced forum-members.

      But be don't be disappointed. keep finding out different ways and means to treat yourself . Life is the name of straggle and fighting back. The GOD is great will help you.

      Report Reply
    • Posted

      You may want to ask your doc if he or she is willing to prescribe natural dessicated thyroid replacement.  Most patients are given Levothyroxine which is an artificial Thyroid hormone.  You can find out more about this by Googling a search like Natural thyroid medicine alternatives to Levothyroxine.  Or you may want to add Cytomel (T3) to your Levothyroxine.  I was on a very lose dose of Cytomel to boost the action of another drug and I felt good on it.  However, my gynecologist added a T4 medication and then I did not feel as good as taking the Cytomel alone.  There is a natural thyroid drug called Armour which combines T3 and T4.  At least 50% of patients have said they feel better on natural thyroid hormone replacement compared to Levothyroxine so I would head in that direction.  
      Report Reply
    • Posted

      Hi! Linda187.

      Thank you very much .

      Your reply is very much appreciated. Here my question to you is" is it hashimoto or grave or both"? Because non of my doc indicated it till now. They didn't order any specific lab test to determine it whereas all above tests were requested by me privately after reading your many old posts except RAI uptake test. There is very long story about endos from here in Oman(where I am working ) and to India (my native land ) non was fit to understand my condition even there were many endos who didn't know that L-carnitine and acetylcarnitine could be used to treat hyperthyroidism and so on. I am still struggling to find out an endo/doc who can understand my condition and work with me to treat it. I got some relief only after applying your protocol but not due to endos that's why there is hope in your carnitine/aclcar research. I know that we are not a doctor but we understand our bodies hence we can exchange our experiences and try it. As a thyroid suffer, you understand better than anyone so please provide me all the informations you have in this regard .

      Lavothyroxin (T4) is for hypo or hyper thyroid?

      What would be safe dosage of amour and cytomel in my case?

      Just give me a rough idea so I can work with the above medicine .

      Thanks a lot.

      Report Reply
    • Posted

      Levothyroxine is for HYPOthyroidism.  So is . Armour.  Cytomel is T3 and usually is given in cases of HYPO thyroidism,  I mentioned this to the lady who had RAI and her thyroid was destroyed so she is not producing thyroid hormone at all and needs thyroid hormone replacement unlike we HYPERthyroid patients who need thyroid hormone blocking drugs.  (So these are NOT the drugs for you).  My thyroid lab results were all normal when I was put on Cytomel 5 mg.  I was put on this in order to boost the action of an antidepressant I was taking at the time so I could have the benefits of it and not the side effects.  I was on it for about 9 or 10 years and the doc who prescribed it told me he never heard of anyone on that low a dose getting Graves or hyperthyroidism.

      In your case, I don't think you have Hashimoto's because Hashimoto patients usually have their TSH go up quickly when on Methinazole but others like myself and you have not had that pattern and would not have gotten our TSH to rise unless we took the supplements (at least I know this is true for me).  By the way, no doctors I know of will tell their patients to take supplements because that is not accepted medical practice to treat this disease.  An endocrinologist did publish a study on the use of L-Carnitine in hyperthyroid patients and the beneficial results but despite publishing this in a valid Medical journal and presenting the results at medical conferences, most Endocrinologists did not pick up on this because it is not the usual medical practice to treat this disease and they are slow to change.  I always told my Endo what I was taking though so he knew what improved my results and he did do some reading on it but I do't think he would treat patients with it.  But we have a good cooperative relationship and he does the medical stuff like prescribe the meds and order the lab tests.  I think you have subclinical hyperthyroidism and this has led you to get Graves Disease.  I don't know if you are on any other medications for other conditions and this might be one cause.  Other common causes of subclinical hyperthyroidism are an adenoma which is a non-malignant tumour in the pituitary gland.  Because your FT4 was just under the normal range on #13, you need to lower or stop Acetyl-L-Carnitine altogether to get it to rise again.  Of all the supplements I used, Acetyl is the most sensitive and can result in hypothyroidism if the dosage is not adjusted as the TSH rises.  I think you need to ask your doc about the possibility of having an adenoma and also ask him if any other drugs you are on for any other conditions could cause this.  I have rambled on here and I hope this isn't too confusing for you.

       

      Report Reply
    • Posted

      It was confusion but now understood. By the way at present I am not on any medication for any other disease . From very beginning of carnitine protocol I began with 250mg aclcarnitine and gradually increased it upto 1000mg but no change in my TSH result when I added 2.5mg methimazole my TSH went up to 1.112 & T4 came down below the lower rang that's why I have methimazole on alternate day. I think I should start taking aclcarnitine on alternate day and methimazole daily? To see whether it can be effective or not.

      I am looking for an endo hopefully would be able to see him shortly and ask about pituitary adenoma.

      Thanks for correction. And, please keep replying.

      Report Reply
    • Posted

      The Acetyl when combined with Methimazole will raise your TSH quickly more so than if used alone.  When used with meds it carries everything you are taking across the blood brain barrier.  That's why I always caution people on this Board who want to try it.  When my results got like yours, i.e. T4 too low, I either stopped or lowered Acetyl or just used Regular Carnitine.  At one point, I did have to use alternate days.  I played around a lot with these supplements to keep my labs where I wanted them.

      When you get an Endo, ask him if a thyroid ultrasound will show up an adenoma if you have one.  I had an ultrasound as part of my work up for Graves, as well as the scan uptake. 

      Report Reply
    • Posted

      Hilinda 187!

      Thanks for your valuable guidance. I too should do some experiment like you did.

      In my lab result no14 my tgab,trab & tpoab antibodies are in normal range. Do you think it still the matter of concern in my case? Please reply.

      Thanks

      Report Reply
  • Posted

    Thank you for your kind words Kalin.  I think you need to give yourself credit and a pat on the back as well.  here's why.

    1)  You are not a passive patient.  Many patients are.

          - You always get your lab result reports and understand what they mean

          - You are proactive on your behalf seeking research, information and other support

    2)  It appears that you have created good working relationships with medical staff because you obviously get 

         tests done, including some that are not routinely done by thyroid docs. 

    I will email you privately later as we are not allowed to post links on the Board.

     

    Report Reply
    • Posted

      Of course should pat on my back but due to you and this forum only that I come to learn and understand something to treat myself . There might be superior treatment available with someone in this world but nobody share with public as you are doing selflessly that's why first credit goes to you only.

      God bless you.

      Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up