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Avatar universal

Trouble with medicines for hypothyroidism

I have been hypothyroid for about 7 years and had no issues taking 1 grain of Naturethroid up until the last year.  Last January I was switched to WP Thyroid when NT was back ordered and then back to NT in June 2019.  I ended up losing lots of hair, extreme fatigue and joint pain after starting the new NT.  I heard that there might be a problem with NT so I switched to NP and the hair loss stopped and joint pain got better until next refill which smelled like cat urine and I started to feel worse so switched to synthetic t3/t4 combo and hair was great and symptoms better but had a weird headache on the top of my head and felt like someone was sitting on my chest.  Next stop was Armour and things got better but per labs was still hypo so slowly increased and hair loss started again.  I may have an adrenal problem so it was suggested that I try cytomel only.  After one week hair loss stopped but feel like someone is sitting on me again and now dizzy with muscle cramps.  I can’t believe how complicated this has become.  Just had labs drawn yesterday to see if I am under or over dosed.  Anyone have a clue what is going on?  It seems like the NDT’s are causing many problems so I am kind of scared of those.
17 Responses
Avatar universal
We need more info in order to try and answer questions.  What was diagnosed as the cause for you being hypothyroid  7 years ago?   When you switched to NatureThroid and then NP were those doses the same as the Armour.  Also what was the Cytomel dose when you tried that?  Please post your thyroid related test results and reference ranges shown on the lab report from when you were on Armour and any other test results since.  

Please review the following list of typical hypothyroid symptoms and tell us which ones you had when on Armour, if any.  Also which symptoms do you have now besides the ones you mentioned?

Fatigue
Increased sensitivity to cold  (temp. below 98.6 which is considered normal)
Constipation  ( have to use fiber or laxatives)
Dry skin (have to use moisturizer)
Weight gain  
Puffy face    
Hoarseness
Muscle weakness
Elevated blood cholesterol level
Muscle aches, tenderness and stiffness
Pain, stiffness or swelling in your joints
Heavier than normal or irregular menstrual periods
Thinning hair
Slowed heart rate
Depression
Impaired memory
Enlarged thyroid gland (goiter)
insomnia/sleep apnea


What makes you think you may have an adrenal problem?
2 Comments
Thank you so much for your reply.  When I was first diagnosed the main symptom was hair loss and my regular doctor wouldn’t treat because I was on the low end of out dated range and my gyno said I should be midrange and treated starting with 1/4 grain and increasing as needed so I think I was only slightly hypo.  She added t3 lunchtime dose a couple of years ago but I didn’t really noticed much.  When my hair really started to come out with the fatigue and joint pain she tested me and it was showing more toward hypo but I had started large doses of biotin.  Because of results she dropped me to 3/4 grain and she should have retested me without the biotin.  She was convinced the symptoms were due to low estrogen so I agreed to take estradiol if she would get me off the NT.  I was unhappy with her so I switched to a new doctor.  When she switched me to NP we started at 45 and then when blood results showed hypo she increased to 60 which was the cat urine smell ones that people were reporting a return of hypo on and my joint pain came back but hair still ok.  Scared that NP was going downhill like NT I went to synthetic t3/t4 (10mcg/38 mcg) but had the headache directly on top of head and felt like someone was sitting on me so dose was dropped but couldn’t get rid of that symptom.  Started armour at 30 mg on 11/19/19 and tested 12/12/19:
“Tsh = 2.89
T4 free= 1.13
T3 free = 2.7
Reverse t3= 17.3
So was told to try and increase armour to 45 mg slowly but fatigue started to get worse and hair shed worse too so it was suggested to try cytomel 3xday at 2.5 mcg and slowly increase.  When I increase I feel dizzy and like someone is sitting on me.  I have done two adrenal tests:
9/27/19
Morning = 7.6 (3.7-9.5)
Noon= 1.8 (1.2-3.0)
Evening = 1.2(.6-1.9)
Night=1.3(.4-1.0)
2/3/20
Morning:= 8.8
Noon=3.4
Evening=(1.2)
Night=(1.5)

I am heterogenous for Mthfr 677 I discovered as well.

I have stayed at 2.5 3xday on cytomel for the last five days prior to labs being done on 2/5 in hopes of figuring out if I am underdosed or overdosed.   I feel terrible right now:
fatigue
Some hair loss
Joint and muscle pain
Brain fog
Freezing
Ears ringing
Dizzy
Slow bowels
Strange symptom - left foot feels hot the last few days

Brain fog and fatigue have been constant but in varying degrees since this started last June.

Do you think that the NDT’s might be compromised or weaker now?

Thank you for your help!


Sorry I forgot the reference ranges:
Tsh = 2.89 (.45-4.5)
Free t4 =1.13(.82-1.77)
Free t3=2.7(2.0-4.4)
Reverse t3=17.3(9.2-24.1)

B12= 947(232-1245)
Avatar universal
First, I would really like to understand the cause  for your initial diagnosis of hypothyroidism.    What did the doctor say was the cause?

Next, I don't think your symptoms have are caused by the brand of med.
I think you have never been adequately medicated.   Thyroid med is not directly additive to your prior levels.    The reason is that when you start the med, your TSH level goes down in response.   That results in less stimulation of the thyroid gland to produce hormone.   The net result of doses like you have been taking is basically very little when the doctor is dosing you based on TSH.     A person's TSH test compared to a group based reference range cannot reliably indicate a person's thyroid status, even in the untreated state.  After starting thyroid med, TSH is basically a wasted test.   A hypothyroid patient should be given thyroid medication as needed to relieve hypo symptoms, without going far enough to cause hyper symptoms.     Typically , with desiccated med like Armour, this will require Free T4 around 35 to 50 % of its range, and Free T3 in the upper half of its range, and then adjusted from there as needed to relieve symptoms.    Studies have shown that symptom relief was mainly associated with Free T3 levels, and less with Free T4.    It is also important to note that the levels I mentioned for FT4 and FT3 are based on the patient not taking their morning thyroid med until after the blood draw, in order to avoid false high test results.   So make sure to do that in the future.  

Hypothyroid patients are also frequently deficient in Vitamin D, B12 and ferritin.   If not tested for those, you should do so and then supplement as needed to optimize.   D should be at least 50 ng/ml, B12 in the upper part of its range, and ferritin should be at least 100.  Hair loss is often associated with hypothyroidism and/or low ferritin.  

I am not optimistic that you can get the treatment needed from your doctors, based on your experience to date.  If you want to try and persuade them to treat as I suggested, then you can click on my name and then scroll down to my Journal and read at least the Overview of a paper on Diagnosis and Treatment of Hypothyroidism: a Patient's Perspective.  You can give a copy to your doctor and ask to be treated clinically, as described, to relieve symptoms, rather than based on TSH.    If you have no hope that will work, then you will need to find a good thyroid doctor.  If you will give us your location perhaps we can suggest a good thyroid doctor in your general area.  
1 Comments
Thank you for your reply.  My doctor has been willing to do whatever I want, the challenge is when I try and raise any med to treat I get troublesome symptoms which is how the possible adrenal problem came into the picture..  is it possible I need to keep increasing in spite of the troublesome symptoms?  I tested iron and seemed to be pooling it and D was tested as a little low so I have been on 5000 of D3k2 to alleviate that.  It seems that treating hypothyroidism with low adrenals is a challenge which is how I ended up on cytomel only.  Will I just have to under treat the thyroid while I get the adrenals healthy?  From the research I have done it seems that the amount of cytomel I am on is super low.  I’m scared to make any more mistakes as my health is deteriorating.  If you know of a doctor in the Los Angeles area I would appreciate it.  I think I need someone with enough knowledge and patience to get me out of the tough spot I am in.
Avatar universal
If your doctor is willing to do what seems to be needed, that is a huge for you.   I would stick with that doctor and see if we can give you info needed to help with your issues.  

The assumption that your reaction to raising your med dose is due to low cortisol is not confirmed by your cortisol tests.   That doesn't totally ruld out inadequate cortisol effect, but I think you should look elsewhere for now.   Reactions to raising T3 med can is reported to also be a possible effect of low ferritin?iron.  Have a look at this link and you will see what I am talking about.

https://www.tiredthyroid.com/feeling-hyper-when-hypo.html

So I suggest that you get a full iron test panel: serum iron,  TIBC, transferrin, and ferritin.   Ferritin is a precursor to iron levels, so it shows up low iron early.  

What is the answer for my question about the cause for your hypothyroidism?
2 Comments
I was not giving a cause for hypothyroidism and I assumed I was just slightly hypothyroid and didn’t think about it again because everything was going well with the medication.

I have had iron checked my doctor and all did it at home.  Here are the results at 11/23/19:
Iron = 130 ug
Transferrin Saturation = 43%
TIBC = 301 ug
Ferritin = 84 ng

Is there a chance this mess started with Naturethroid going south (for me at least)?
I was not given a reason for original hypothyroidism diagnosis and I assumed I was minimally hypothyroid.

Here are my most recent iron labs:
Iron = 130 ug
Transferrin Saturation = 43%
TIBC = 301 ug
Ferritin = 84 ng

I did have an ultrasound of my thyroid done 9/23/19 because my doctor thought my voice sounded a little gravelly.  Results were :  Diffusely heterogeneous thyroid parenchyma, compatible with sequels of thyroiditis.  No discrete thyroid nodules.
Avatar universal
With the symptoms you reported,  your test results of FT4 at only 33% of its range and FT3 at only 29% of its range, along with your experience with the other desiccated type meds, I suggest that you need to stay with Armour and increase dosage until you get your levels high enough to relieve hypo symptoms.    To achieve an average daily replacement dosage,  this typically requires a dosage between 150 and  225 mg of Armour.    The key is to increase your dosage enough to relieve hypo symptoms, without going too far and creating hyper symptoms.  Along with that make sure to keep your Vitamin D at least 50, test and supplement for B12 to get it in the upper part of its range, and ferritin should be at least 100, so you could supplement a bit there also.    
1 Comments
Thank you!  Why do you think I started to get more hair shed and feel worse as I increased Armour?  I was only at 45.  It seems like with each medicine I try I start to get better but then by the 3rd week I start going downhill again although my tests still show hypo.  Do you think dosing with cytomel only is not going to be helpful?
Avatar universal
I don't think hair shedding is something that occurs in a short time as a result of a change like that.    It is important to note that when you start on thyroid med, the dosage is not additive to your prior totals.   The med causes TSH to go down, and as a result your output of natural thyroid hormone is reduced.   This continues with dose increases until TSH becomes essentially suppressed.  Then any further increases in thyroid med will start to raise your levels.   People often find that their symptoms are no better, and maybe even worse, when starting on thyroid med, until the dosage is adequate to raise the prior FT4 and FT3 levels.    You may be interested in this description of how an outstanding thyroid doctor doses his hypothyroid patients.   " To initiate Thyroid Replacement Therapy with NDT in patients who are healthy and less than 50yrs. old, I start with 1/2 gr of NDT (30mgs) and increase by 1/2 gr every two weeks up to 1.5 to 2 grs, depending on body weight. In elderly or ill patients or those with suspected hypocortisolism, I start with just 1/4gr and increase by 1/4gr every two weeks up to just 1 to 1.5grs daily. "  Then he extends the time between any further increases needed to relieve hypo symptoms, since symptom change tends to lag somewhat changes in med dosage.  

If I haven't mentioned it previously you should make sure to always delay your morning thyroid med until after the blood draw for thyroid tests that day, in order to prevent false high results.    

No, I see no current reason to go on Cytomel only.
1 Comments
Thank you again!  I do not take thyroid medicines the morning of my labs.  Since I have been on cytomel only for the last two weeks would you recommend that I stop today and start Armour tomorrow?  And if so, 30 or 45?  I know it sounds weird that my hair reacts that fast but it seems to improve two weeks after a med change.  When I was using synthetic compounded t3/t4 and having the weird heachache on top of my head my doctor suggested to take it and then stop for a couple of days after I reduced the amount and was still having the headache.  My hair would start to shed when off and stop again when on.  I can tell that it is going to start because it gets dry and lifeless as it was for the last few weeks on Armour 45.  After a week on cytomel it stopped shedding and look full.  I know it sounds crazy.  It’s like the amount I need to keep my hair healthy is too much for my body.  I am 52 years old and last summer when all this thyroid stuff happened I was under a lot of stress.  
Avatar universal
Self medication is not usually recommended.  You need to get your doctor on board with med dosages.  Just to be cautious, if it were me I would start with 30 mg of Armour,  and drop the Cytomel to 2 1/2 mcg twice a day.   I would also make appt. with doctor and get agreement for dose increases as mentioned above.  
1 Comments
I am getting worse the longer I am self dosing with cytomel only (currently 2.5 mcg, 3xday).  Is that a normal amount for cytomel or a small amount?  I have an appt this week to go over my labs from last Thursday but feel like I will collapse before then.  My doctor will not want to do labs for a month.  Is it possible to do them after two weeks on Armour and see if it is working?  I get scared as soon as I start feeling worse on a new medication.  I spent two months on the new Naturethroid last summer getting worse each day and lost 1/3 of my hair before my old doctor would take me off.  You also mentioned supplementing iron?  Any reccomedations for what kind?  Thank you so much for helping me through this scary time.
Avatar universal
That is a small amount of Cytomel.  You could try to get the doctor to agree with increasing your dosage every two weeks,  as mentioned, and you can tell if it is going well.  You don't need labs any more often than 4 or 5 weeks at the earliest.      

There are a lot of good iron supplements such as  ferrous fumarate or ferrous bisglycinate.  Another very good one is VitronC, which contains 65 mg of iron.   With your ferritin level, I would not want to average more than about 25 mg daily and then test for ferritin again after a couple of months.
1 Comments
When I asked for cytomel 5mcg I said I would start at 2.5 dosed 3x day and increase slowly but the increases seems to be causing tinnitus and warm sensations in my leg.  So weird!  I was concerned it was too much so stayed at 2.5 mcg which was my starting dose.  Is that my problem?  That I give up to0 soon and I need to work through the uncomfortable effects?  I assumed that I should be gradually feeling better with each increase of NDT or cytomel but instead I feel worse.  Since hair loss is a symptom of both hypothyroid and hyperthyroid it makes it confusing to tell what is happening.
Avatar universal
Yes, I think changing too soon is a problem.    There is no way you would become hyper from such a small amount of cytomel.   You need to commit to a plan for dosage and increases and stick with it unless there is some unforeseen reaction you cannot tolerate short term,  which is not likely with your cortisol  and ferritin levels.  
2 Comments
Thank you so much!  You have been so helpful.  I really appreciate you sharing your knowledge.
I started back on Armour 30 and two doses of 2.5 mcg of cytomel (one with morning armour and one at noon).  I started to feel a little better but now the hair fall is starting again and I feel wiped out.  Every time I start a new medicine I initially feel better after a week or two but then start to feel bad again and I panic thinking it is a side effect.  How do you tell whether a new symptom is a side effect or a dosing challenge?  When I took Armour for two months there was initially no hair loss for the first six weeks and then it started gradually increasing with fatigue as I was raising which is why I stopped.
Avatar universal
I know it is easy for me to say, but I'd stick with the plan I gave you on Feb. 9, that is used by an excellent thyroid doctor.    
1 Comments
When you raise the Armour after two weeks by 1/4 grain do you also raise the cytomel?
Avatar universal
A grain of Armour (60 mg) has 38 mcg of T4 and 9 mcg of T3.   With that ratio of T4 and T3, a person taking Armour will typically end up with FT3 higher in range than FT4.  so I don't see any need to also raise your T3 med.    

Don't forget that you should delay your morning thyroid med until after the blood draw for thyroid testing, in order to avoid false high results that tend to confuse things.   Also don't overlook the importance of supplementing for Vitamin D, B12 and ferritin as needed to optimize.  
1 Comments
Thank you!  I have been on the Armour 30 and two doses of 2.5 mcg cytomel for a week and a half now and feel very hypo.  Do I need to wait until 2 weeks (another half week) or would it be safe to raise now?
Avatar universal
Thyroid med will have little or no effect until the dosage is high enough to essentially suppress TSH.  After that dose increases will start to raise FT4 and FT3 levels.   Even with that the effect on symptoms lags behind changes in med dosage and you are a long way from anywhere near optimal dosage.    I suggest you stay with the plan,   Understanding the process will help you with the patience you will need.  
2 Comments
I really appreciate your guidance.  Thank you!
Hi Gimel,
I wanted to get your thoughts.  I saw my doctor last Thursday (a week ago and she suggested I up my dose of Armour from 30 to 45 (a few days earlier of two weeks) and continue with the 2xday of cytomel 2.5 mcg.  I felt about the same throughout the week until last Wednesday I started to feel really fatigued and spacey.  I emailed her and she said I should go back to 30 mg of Armour and start increasing cytomel.  Does this sound right?  I feel like I’m slowly getting worse and constipation has been a problem since I experimented with cytomel only.
Avatar universal
I don't really understand why you would have felt any significant difference with only an increase of 15 mg of Armour; however since your FT3 was lower than optimal for most people, and your doctor is willing to increase your T3 dose, I'd go ahead and do that.   You really want your Free T3 in the upper half of the range, and adjusted from there as needed to relieve symptoms.    Which raises a question.  Did you take any thyroid med before those last tests?    If so, how much was taken?  
1 Comments
I know, I didn’t think it would make any difference either unless it is something else going on.  My assumption is that I am still under dosed, not overdosed since I still have hypo symptoms.  Do you think she thinks I am hyper now (we communicate through her assistant on email)?  I was on 30 mg of Armour before the test results above and no cytomel.  The morning I went to see her a week ago my temperature at her office was 97 degrees.  I’ve always been a little under like 98.4.  My temperature now is anywhere from 98.6 to 98.8 if that shows anything.  I’m typically warm all the time in the last week.  I was hoping to stay on 45 mg for another week and then test with a home kit to see if I was on the right track.   Concerned that lowering back right now will force me to wait longer to test.  Symptoms now:
Extreme fatigue
Brain fog
Constipation and bloating (new symptom that began on cytomel only period)
Aching joints
Skin feels warm
Some hair loss
Tinnitus
Avatar universal
Before further discussion please answer the questions about whether you took your thyroid med before the blood draw, and if so what was the amount?
2 Comments
I’m sorry I misunderstood the question.  I did not take the Armour 30 mg in the morning before the blood draw, I took it after the blood draw.
Sorry, I misunderstood.  I did not take the Armour 30 dose I was taking before the blood draw that morning.  I took it after.
Avatar universal
I suggest that you stay with the plan and continue to increase your med dosage toward getting your FT4 around mid-range, and your FT3 into the upper half of the range, and adjusted from there as needed to relieve symptoms.   And as mentioned previously, don't overlook the importance of supplementing for Vitamin D, B12 and ferritin as needed to optimize.   One other thing to keep in mind is that symptoms typically lag behind changes in med dosages.   So for the best overall result, patience is important to avoid unnecessary changes.  .  
1 Comments
Thank you for your quick responses.  Do you have any idea why she would have me go back down from 45 mg to 30 mg after I told her about the increase in fatigue?  She said she thinks my final dose will be either 30 or 45 which seems low.  My original dose on Naturethroid for the last 4 years had been 1 grain.  
Avatar universal
In view of your symptoms I have no clue about the reduction.  Small doses of thyroid med do not raise serum levels.  Our bodies are used to a continuous low flow of thyroid hormone in the treated state.  When taking thyroid med it causes the TSH to do down, thus reducing the output of natural T4 and T3.  So only when TSH is basically suppressed will further increases in dosage start to raise your FT4 and FT3 levels.  

You need a full replacement dose that relieves symptoms.   Since an average thyroid gland produces about 94-110 mcg of T4 and 10 - 22 mcg of T3 daily, when you consider that absorption is only about 85% that means the average daily replacement dosage needs to be about  2 - 3.5 grains of desiccated thyroid med (120 - 210 mg).  So you can see just how far your current dosage is from those levels.  
2 Comments
Hi Gimel -  I have raised my dose back to 45 mg after we corresponded by still feel bad.  Today I have increased joint pain along with the ever present fatigue (I have now been on the 45 for ab out a week).  Shouldn't the symptoms be getting better as I increase my medicine?  Could I get an increase in symptoms while my body adjusts and still need more?  My doctor thinks we need to test for other things now since I seem to have trouble with both increasing and lowering my dose.  I'm losing hope of ever figuring this out.
Hi Gimel - I went back up to the higher dose of 45 mg about a week ago and seem to be having more joint pain again and still very fatigued.  This doesn’t make any sense.  Shouldn’t I being seeing some improvement to know that I am on the right track.  
Avatar universal
Quite often hypothyroid patients report feeling no better, and sometimes even a bit worse, when increasing their med dosage until TSH becomes suppressed.  After that , further increases in dosage will start raising your FT4 and FT3 levels.  To get to a good level for you will most likely require your FT4 near mid-range and your FT3 in the upper half of its range.   And don't forget that symptom relief tends to lag a bit behind reaching those levels.   Are you supplementing for iron?   Your B12 was good.  Without looking back through everything do you have a test for Vitamin D?
2 Comments
I started supplementing with a 15 mg iron to go slowly since constipation was an issue.  Since increasing to Armour 45 mg the opposite is now true.  My last vitamin D test was on 2/6/20 and was 61.4 (range is 30-100).  I currently am taking 5,000 vitamin d3+k2.  Right now I feel super fatigued (like I haven’t slept) and my joints all ache and very foggy brained, basically barely functioning.  Is the only way to know that tsh is suppressed is to have a blood test?  How do you know that feeling worse is part of the cure or if there is something wrong with your medication and or dose?
Also, I received a heavy metals test I did.  Calcium and magnesium showed in 84% (I take magnesium before bed).  So did Strontium (not sure what that is) and selenium (supplementing with that).  Potassium and chromium are low in 16th %.
Avatar universal
I wouldn't bother testing for TSH.  It means nothing when taking thyroid med.  Just stay with the plan and get the doctor to continue increasing your thyroid med dosage.  
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