help

[farie02]

So ive noticed after taking my meds i go through uncontrolable mental n cognitive changes..can some1 or any help to y this is..i take t3 morning n night with t4 between..its most feared times taking meds...please help levels are on the change but regardless these dont go away or are getting any better

[Hidden]

Oh poor you fabrie02,

A hormone imbalance can cause major changes in both mental and physical behavior patterns. The good thing is it can be rectified with the correct medications.

In order to access what is happening it is vital to get a thyroid hormone blood test for TSH, FT4, FT3 and thyroid antibodies TPOAb and TGAb.

Also get your Vit B12, Vit D, Folate and Ferritin tested as deficiencies in any of these can not only disrupt your mental and physical behavior further but can also stop thyroid meds from working properly.

If you post all results complete with ranges (numbers in brackets) , someone experienced will comment and advise.

It is a difficult time for you fabrie02 but remember that you were once well and believe you will get find that again.

[Hidden in reply to Hidden]

fabrie02

Sorry, I have only just read your previous posts and see you have already posted results and been having troubles for some time.

I have been experiencing brain seizures too. It is very scary and makes me think I am going quite mad. My doctor wouldn't listen so I paid to see a private endo who referred me to a neurologist who I am due to see next Thursday. My seizures happen mainly at night and are always accompanied by a hot flush, internal tremering throughout my body and leave me with a high pitch ringing in my ears. They may happen several times in a row and there appears to be no pattern.

I really sympathise and urge you to seek further medical help.

You have had some seriously good advice in previous posts and appear very confused with meds you are taking. You need support and guidance from a doctor who understands major thyroid hormone imbalances.

[shaws Administrator]

Hi fairie

What dose in total are your taking, please i.e. T4 and then T3.

[farie02 in reply to shaws]

Have been put on a t3 7.5 every 12hrs and am on synthyroid..50mg sat sunday tuesday thursday 100mg other days..

[shaws Administrator in reply to farie02]

Hi farie02

I have just looked at your last post wherein you put your results and ranges. On that one you said you were taking NDT so assume your doctor has now changed it to Synthroid (I couldn't get well on levothyroxine). Some of us cannot get better on levothyroxine. I would ask your doctor to prescribe T3 only on a trial for 3 months.

T3 also called liothyronine or tri-iodothyronine is the Active hormone every one of the billions of receptor cells in our body needs for us to function. It may well be you cannot convert synthroid into sufficient T3 and the two daily doses of T3 is insufficient for your receptor cells which need T3 to function.

You are having awful symptoms and I sympathise with you as we do expect our doctors to sort us out but with the thyroid hormones it seems to be a problem.

I take just over 35mcg of T3. I take it once daily in the morning when I awake with 1 glass of water. Most Endocrinologists, I believe, have a belief that T3 is difficult to medicate: that the effect doesn't last long but I find, for me, it is perfect. There are also lurid stories about it and that's only because of the pharmaceutical companies giving monetary rewards for the use of their levothyroxine products.

There is also something called Thyroid Hormone Resistance which means we only improve when we use T3 only. This is a link by a doctor (deceased now) who used NDT for his patients or T3 for his resistant patients. You can give a copy to your Endocrinologist and you will see that Cytomel (USA T3) has no known side effects when used. Excerpt:

Dr. Lowe: The physician should call a pharmacy and request the leaflet given to patients when they pick up a Cytomel (T3) prescription. The physician would learn, as the patient leaflet on Cytomel explains, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." Other than Nystatin, he probably will find that no other drug he might prescribe is as free from adverse effects as T3. and

Third, the leaflet on Cytomel pharmacies give patients when they fill their prescriptions states, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." This information is accurate—when plain, full-strength, one-time-per-day doses of T3 are used properly, there are no adverse effects. The only adverse effects occur when a patient takes a dosage that for her is excessive. With Cytomel, if overstimulation occurs, it can be stopped with one or two small doses of propranolol. Or the patient can simply reduce her dosage of Cytomel the next time she takes it. I want to emphasize, however, that when our protocol is used properly, there is no overstimulation to be avoided by using timed-release T3. The protocol has safeguards against adverse effects.

25mcg of T3 is equal in 'effect' to 100mcg of Synthroid (levothyroxine) so maybe your Endocrinologist will be kind and let you trial T3 only. If he maybe calculate your dose to 1 1/4 tablets to start = 106.5 Synthroid. and after 2 weeks you can raise by another 1/4. Take note of your temperature and pulse. If you feel overstimulated, drop your dose down again by 1/4.

Bear in mind I am not medically qualified but have been through the trials and tribulations that most of us on this forum are going through or have been through with various thyroid hormones.

Best wishes.

web.archive.org/web/2010103...

web.archive.org/web/2010121...

[farie02 in reply to shaws]

The ndt was stopped an the slow release started in place of..i dont even feel human thats how bad it is..

[shaws Administrator in reply to farie02]

Slow release isn't good, so I have read. No wonder people 'do it themselves' just because the medical professional, at times, seem irresponsible. Make an appointment with him, just say you realise he is trying his best but it's not making any improvement with you. Can you please try Cytomel and not timed release.

This is another excerpt from Dr Lowe:

"Dr. Lowe: Whoever posted the statement was right. In my experience, for thyroid hormone resistance patients, sustained-release T3 is a poor alternative to plain T3 taken once per day. We don’t have enough evidence to know why plain T3 is more effective."

I believe how bad you are. No-one unless they've been there can possibly understand. It's horrible.

Ask for plain Cytomel. He probably doesn't know that T3 has to 'saturate' all our receptor cells and then the 'waves' from them last for between 1 and 3 days for each single dose.

I hope you have some success but most times when doctors try to give their patients T4/T3 usually the dose of T3 is far too low to make much of a difference.

[farie02 in reply to shaws]

Ive only been slow release a week but i think i should hav been feelin lil improvement if it was helpin instead on taking the thyroid meds i get almost a bad depression for hour n half..but hav weird episodes through the day..

[shaws Administrator in reply to farie02]

I think you would have felt an improvement also if you were on the optimum of hormones.

[farie02 in reply to shaws]

Hi my t4 dose now is 100mcg monday wednesday friday and others 50mcg an t3 is slow release i beleive at 7.5 morning n 7.5 at night total been 15mcg

[Aurealis]

Hi farie02, sorry your having such difficulty. There are four possibilities as I see it. You may not be on the correct overall dose, or you may have the balance of T4 /t3 wrong for you. Alternatively it may be that things haven't settled down yet and you need to give it longer, or that you need to redistribute your T3 throughout the day. I would suggest that to start with you keep everything the same and do everything you can to minimise your level of stress eg take time off work. Also take measurements through the day of you rpulse, temperature and blood pressure. Most useful midway between doses of T3 and immediately before each T3 dose. On T3 these can be more helpful than blood tests. Use your mood changes to guide dose eg download the hospital anxiety depression scale and use it to measure how you feel. Keep records of everything. It will help you in the end and in the meantime it makes you feel empowered in conquering it! Good luck.

[farie02 in reply to Aurealis]

Can one take just t3 an not need t4

[Aurealis in reply to farie02]

Some people just take T3 (but personally, I feel poorly if I take no Thyroxine) See book by Paul Robinson Recovering with T3 or the Facebook group Recovering with T3 group, most members take T3 only. I don't think they use slow release Good luck.

[Aurealis]

Just looked at your other posts - your T4 is very high for someone on T3 /T4 combo. What doses are you taking? When I was on T4 only I needed T4 above the top of the range, but on T3/T4 combo I need T4 below bottom of range. But we are all different... You will get well, you're just going through a very difficult patch.